1st ever complex spine surgery in Tanzania
Read the journey of how the 1st ever spine surgery was performed in Tanzania.
I just wanted to share a little about what the process looks like to get ready to do the FIRST complex spine surgery in Tanzania. For the past 5 years, we have been working closely with Dr. Honest Massawe to train, support, and empower a Tanzanian doctor to have the knowledge, skills, and technology to care for Tanzanian children. I knew, the first time I met him, that he was going to be the doctor that could do it! And boy was I right. In order for this to happen, for 3 years, he regularly left his family and traveled to Sweden, Switzerland, South Africa and more, to become an amazingly skilled spinal surgeon.
BBBBUUUUTTTT, just because the doctor is ready, doesn’t mean the country is actually ready. The hospital is excited and willing, but they don’t have all the equipment we need. Thank goodness for strong relationships. First, something called neuromonitoring and the person who operates it was borrowed from Kenya. Second, is finding a company that can supply the hardware that will go in her spine.
To be honest, the entire process of getting everything together took about weeks of planning, then postponing, then canceling and then planning again. Thank goodness Oliva is a strong, resilient young woman who stayed positive and patient through it all. Below is the actual timeline of how the surgery finally happened to give you an idea of what working in East Africa looks like.
-----------------------------------
A week after our first surgery attempt:
Well…what to say…..I was so excited to announce that Oliva was going to go into the hospital on Friday, and have her surgery on Monday. But it is postponed. This is the challenge of being the first. We can’t find the actual hardware that they need for the surgery. Specifically, the rods, screws, and connectors that will be used to correct Oliva’s spine. There is not one company in Tanzania that makes all the hardware. Back to the drawing board. I hope we can find the supplies that we need soon.
10 days later:
Great news, we have the supplies and surgery is scheduled for one week from today. Woo hoo!!
6 days later:
Wait false alarm, canceled again. We had problems getting the equipment from Kenya. This time I feel really badly. Oliva was already in the hospital and was preparing for surgery when we got the call. She is such a strong young woman. She went home and simply said that I know this is going to happen very soon and I can wait. (even though she has been waiting for years already). I am in awe of her strength and positivity even with such huge challenges.
1 week later:
Here it is, third time is a charm. I truly feel like nothing else can go wrong and Oliva will finally be admitted to the hospital on Friday and have surgery on Monday. I can feel it. This is it! I can’t believe after all these years; she’s finally getting the help she needs.
Post-surgery:
I am so excited to report that Oliva had a successful surgery. She is in the ICU and is recovering nicely. If everything goes well, she will spend approximately one month in the hospital recovering and doing physical therapy before she is discharged and will return home. I will periodically send updates as she continues her journey towards a full recovery.
IF YOU WANT TO HELP US PERFORM MORE SURGERIES AND SAVE MORE LIVES, PLEASE CONSIDERING DONATING HERE
On the 1st day of Stand Tall Christmas...
It just seems fitting that for the first day we should go all the back to where it all started, with Benson. When we first met Benson, he was about 9 years old and was suffering from tuberculosis in his spine.
Introducing the new and improved Benson!!!
It just seems fitting that for the first day we should go all the back to where it all started, with Benson. When we first met Benson, he was about 9 years old and was suffering from tuberculosis in his spine. He was in extreme pain, could only walk a couple days a week and only with assistance, and he was kicked out of school because the teachers didn’t like the way his back looked. To say the least, this was a pretty sick and unhappy little boy.
Fast forward to today and Benson has turned into the happiest, strongest, and driven young man. He not only loves, but excels, at sports. He went from being unable to walk, to a soccer rockstar. He is a straight “A” student, who is currently in the process of applying to high schools and he dreams of being a spine surgeon “like the ones who fixed my back.” If you saw him on the street, you would never even know he was previously paralyzed.
Benson’s story is nothing short of a miracle. His experience inspired the entire future of Stand Tall. He taught us that surgery wasn’t enough. In order for the children to truly have a full recovery and be successful, they need more than surgery. They need opportunity. Benson is the reason that we sponsor education for every child. Only through education, will they have the chance to dream.
You can help us make miracles happen - be a Stand Tall Warrior by donating today. Donate now.
On the 2nd day of Stand Tall Christmas
Our founder, was at a restaurant and someone at a neighboring table overheard her conversation and said they knew a little girl with a bad spine. They brought Nalari over to her house the next morning. Nalari’s spine had turned and was growing into her lungs…
We are introducing Nalari…
What a precocious little girl!!!!! Nalari came to Stand Tall in a little bit of a backwards way. Our founder, Masha, was in Tanzania at a restaurant and someone at a neighboring table overheard her conversation and said they knew a little girl with a bad spine. The brought Nalari over to her house the next morning.
Nalari is from the Masai tribe. She was 8 years old at the time and couldn’t walk more than a few feet without wheezing because her spine had turned and was growing into her rib cage. She was in and out of different orphanages because since her family needed to herd for work, they just left her in their hut alone and she almost died of malnutrition.
Nalari received her 1st surgery in 2016, where the surgeon implanted “growing rods”. Thank goodness she got to grow because this girl is tall. She just returned to the hospital over the summer where she received her 2nd and final surgery.
Nalari is the child that challenged all our ideas about what recovery means. At the time, we believed that school was all they kids needed to catch up and have a future. Oh, were we wrong!!! After her surgery, we tried to reunite Nalari with her family, but in one week she developed both a fungus and an infection. Obviously, school was not a priority until we could find her a safe and clean place to live. Also, at 8, Nalari couldn’t read or write because she has severe dyslexia and Tanzanian schools don’t acknowledge learning disabilities. So even getting her admission into school was nearly impossible.
Where are we today? Nalari now lives at the amazing Hope Village Orphanage. She is super tall and attending school everyday. She still struggles with learning, but all the kids practice her letters and numbers with her and she is proudly going into 2nd grade in January. The situation isn’t perfect. She still struggles at school everyday trying to learn like “normal” students and although her family visits her regularly, it looks less and less likely that she will be able to return home with them. But, Nalari has truly taught us the true definition of resilience. This beautiful little girls refuses to give up and neither will we.
You can help us make miracles happen - be a Stand Tall Warrior by donating today. Donate now.
On the 3rd day of Stand Tall Christmas
She was living with an abusive family member, denied food or a bed, and was forced to skip school and perform long hours of manual labor, scrubbing floors and washing clothes on her hands and knees. This is hard enough for the average person, but nearly impossible for someone with severe back problems.
We are excited to introduce Oliva…
Oliva’s journey with Stand Tall is very different from most of the other children. Oliva has not had surgery yet. She is eligible for surgery and even made it as far as the airport to fly to the surgeon. Due to an immigration issue, she wasn’t allowed on the plane. Since that day she has just been waiting, waiting for two long years.
You may ask, then why are we sharing Oliva’s story in our successes? That’s what makes her story special. While working with Oliva, we learned about her absolutely horrific living in situation. She was living with an abusive family member, denied food or a bed, and was forced to skip school and perform long hours of manual labor, scrubbing floors and washing clothes on her hands and knees. This is hard enough for the average person, but nearly impossible for someone with severe back problems.
After that fateful day, when Oliva couldn’t fly to the hospital, we decided for this one girl, we would place her straight into our “Phase 2: Give A Life” program. We worked with the authorities to remove her from the home and arrange a safe place for her to live when she’s not in school. She also goes to boarding school in Kenya, as far from her families abuse as possible. What has happened since is fantastic. Free from hours of manual labors, Oliva’s scoliosis has stopped progressing and she can live a mostly normal life. She even reports having almost no back pain. She is entering her senior year of high school and wants to go to college to study business, maybe even be an accountant. Without Stand Tall, Oliva would not have the life she has today, so even without having surgery her life is a success.
You can help us make miracles happen - be a Stand Tall Warrior by donating today. Donate now.
On the 4th day of Stand Tall Christmas
For the first time in life, 48 children and families had answers to their questions. It was an emotional day for everyone involved.
We share the story of The Clinic aka The day we saw 48 kids in 6 hours
Last year Stand Tall hosted their first ever spinal clinic in Moshi, Tanzania. For the first time in life, 48 children and families had answers to their questions of why their child’s back looked funny, why couldn’t they breath, why did they walk differently, and why didn’t they play like the other kids. It was an emotional day for everyone involved.
On the positive side, some families found out that their children would be fine and didn’t need surgery, some got braces, and some joined the Stand Tall waiting list to receive surgery in the future. Not all children were so lucky. The emotional side comes for the children whose condition condition was too severe and it was unsafe to operate. That there was nothing we could do to help.
No matter what the families found out that day though, they were all relieved to at least have information. There is go greater gift than knowledge. The clinic was just over one year ago, but we are still getting phone calls. Word is spreading that you don’t have to live with scoliosis, that there are options. My only hope is that we can continue intervene before more children get to a life-threatening condition. No one should die this day in age because of scoliosis.
You can help us make miracles happen - be a Stand Tall Warrior by donating today. Donate now.
On the 5th day of Stand Tall Christmas
I got a teary phone call from his mother because Samweli was about to get kicked out of school for failure to pay. To be honest, I felt guilty that I found him a sponsor who would just throw him away so carelessly.
We are introducing the adorable Samweli
Samweli is the only child that we sponsor who never had any spine problems. He comes from what I call the “before Stand Tall” days. I met him on my first trip to Tanzania around the same time I met Benson. They would attend the same local school program called Jipe Moyo where I was volunteering.
Technically, Jipe Moyo was a nursery school. I was working with the Mama’s, while another volunteer taught the children. This was a “school” where the children carried the benches into the “classroom” everyday so they could have a place to sit. There was one blackboard and one piece of chalk. There were literally no other supplies; no paper, pens, pictures on the walls, nothing.
You might ask yourself why children would choose to come to a school like that. The problem is that even though public school is free in Tanzania, parents still need to send their children with a uniform, shoes, school bag, notebooks, or pens. These costs seem astronomical to many Tanzanian families. So they came to us instead.
Every morning, you would see a ragtag bunch of mostly 4 and 5 year old children walking themselves to school. They wore the same clothes everyday, many were malnourished and some had other illnesses or parasites. It was one of the most beautiful and simultaneously heartbreaking sites to see their smiles as they came running up to the building calling out “teacher, teacher!”
In the midst of the chaos, one child stood out, Samweli. He was the only child whose mother walked him to school...every single day. Although he wore the same clothes, they were always clean and all the holes had been sewn. And he was distinctively a rolly-polly, well-fed little boy. It was immediately apparent that he had a mother who loved him. This family really struck me. I worked hard and found him sponsorship through a girl who was living in the same hostel as myself.
Regretfully, things don’t always go as planned. Samweli was sponsored for about a 1.5 years, then his sponsorship literally disappeared. I got a teary phone call from his mother because Samweli was about to get kicked out of school for failure to pay. To be honest, I felt guilty that I found him a sponsor who would just throw him away so carelessly. By this time, Stand Tall International was created and we were still finding our way, so I just snuck Samweli in with the rest of the children attending school.
To date, he is 10 years old, entering 5th grade and is just killing it. His mother is still incredibly involved and actually moved villages so that we could transfer him to a better school. He attends everyday, loves his classes, joined the debate club, and loves practicing him English. He had some challenges in school last year, so he voluntarily stayed after school until 8pm everyday to get tutoring. What kid does that?!?
Running a nonprofit taught me that we can’t help everybody, as much as we would like to. We have to have some parameters in place to define our program. But, I’m happy and honored that Stand Tall keeps supporting Samweli year after year and I know that he deserves everything he gets.
You can help us make miracles happen - be a Stand Tall Warrior by donating today. Donate now.
On the 6th day of Stand Tall Christmas
I’m going to share a Stand Tall story that I have never shared before, the story of baby Joan. Full disclosure, this one is quite sad.
You get to meet Baby Joan
I’m going to share a Stand Tall story that I have never shared before, the story of baby Joan. Full disclosure, this one is quite sad.
In the early days of Stand Tall, a family called me desperate for help with their 18 month old. Something was wrong because no matter what they did, her head always flopped to the side. She could stand, but couldn’t walk or really do much of anything because her head lay on her shoulder. The family had visited every local doctor they could find and were at their wits end. We did her X-rays and intake, then rushed the images off to one of our partner surgeons.
He discovered that Joan was born with a “hemi-vertebrae” in her neck. It means that one of her vertebrae was misshapen and her head flopped to the side because there was no bone to hold it up. She would need surgery. But, he wanted to delay the surgery for a year to let her grow more. We informed her family of the good news, gave them a date for 1 year later, and sent them on their way.
We sent them away because there was no Phase 2 program back then. No system in place to monitor the children regardless of their place the process and the unthinkable happened. 6 months later, her parents called me. Joan had just died. She had been sick for a few days and they tried to take care of it at home. By the time they finally took her to the hospital, it was too late. Sitting here writing this feels just as devastating as if they called me yesterday. Of course I was sad, but more than that I was angry. Angry at her death. Angry at the unnecessariness of it. Angry that I didn’t know sooner, so I could do more.
I vowed that day that we would never lose a child to a preventable, easily treatable illness. Now, all the families have a Stand Tall staff member on the ground that they can contact for any reason. This includes school problems, medical concerns, or just a little comfort. We also have relationships with a variety of doctor including pediatricians, gastroenterologists, and dentists who are all available to treat our children. Phase 2 is why we have a 100% success rate. Every child who has entered the program receives monitoring, follow up care, and access to our extensive network. I just wish we had this when we met Joan because then she could have “entered the program” and maybe she would still be alive today.
You can help us save children like Joan before it’s too late - be a Stand Tall Warrior by donating today. Donate now.
On the 7th day of Stand Tall Christmas
As one small organization, there is no way we can help an entire country of children. So what about the ones outside of Stand Tall’s reach, we can’t forget about them.
We are excited to introduce Dr. Massawe
We have a new goal at Stand Tall, to make larger systemwide changes in Tanzania as a whole, to prevent more and more children from reaching a life threatening condition. We are the only organization in the entire country working with spinal deformity. As one small organization, there is no way we can help an entire country of children. So what about the ones outside of Stand Tall’s reach, we can’t forget about them.
This is where Dr. Massawe comes in. He is a local Tanzanian orthopedic surgeon. He was born and raised in Tanzania, is a young doctor, and is passionate about spine surgeries. He has already performed a handful of successful spine surgeries, including 2 for scoliosis. What he needs is more training. This is our next big project. To bring Dr. Massawe to the United States for 3 months to study spine surgery.
With this training, Dr. Massawe will have the capability to perform more scoliosis surgeries, year after year. He can start performing surgeries early in a child’s diagnosis before they get to a critical state, before they need Stand Tall. So many families tell us that they have spent years visiting different doctors throughout the country looking for an answer. By supporting the training of Dr. Massawe, these families will have an answer. My personal dream is that one day Stand Tall will no longer be needed in Tanzania, that they have the resources to care for their own children. This is the first step towards that dream.
You can help us train Dr. Massawe - be a Stand Tall Warrior by donating today. Donate now.
On the 8th day of Stand Tall Christmas
Even to an untrained eye, it was obvious how desperately David needed surgery. His cervical vertebrae, the ones in his neck, made the shape of an “L”. His curve was so severe that we were worried that one fall, and he would be paralyzed for life.
We are going to introduce you to David
This is the one of the most smiley boys you will ever meet. David’s family is the first family that walked in to meet with me and handed me a pile of X-rays of David’s spine. They were prepared, organized, and ready to take action. Even to an untrained eye, it was obvious how desperately David needed surgery. His cervical vertebrae, the ones in his neck, made the shape of an “L”. His curve was so severe that we were worried that one fall, and he would be paralyzed for life.
David’s scoliosis was caused by a neurological condition called Neurofibromatosis (NF). It is a genetic disorder that can cause a variety of other problems including hearing loss, learning impairment, heart problems, and severe pain. It also causes the growth of tumors on nerve tissue.
For David, this means scoliosis and a developmental disability. Usually, this is a death sentence for a Tanzanian child. Special needs education or services are non-existent. But, his family are fierce fighters for this child and he is starting high school in a few weeks. Secondary education is something only 33% of Tanzanian children attend. This is a huge achievement for David.
Families like David’s make our job easy. They attend every appointment, fight for every resource available for him, and make sure that he is happy, loved and well-cared for. I wish that every child had David’s story. He will always have challenges because of his NF. But, David is the one child, I know we don’t have to worry about.
You can help us make miracles happen - be a Stand Tall Warrior by donating today. Donate now.
On the 9th day of Stand Tall Christmas
This poor little girl was so scared the day we did her first x-rays, that we had to take them laying down because she wouldn’t stop crying. This is definitely not the Jamila you see today.
Today you get to meet the wonderful Jamila
We met Jamila a few years ago in the main city of Dar Es Salaam. She was actually our first Muslim patient. This poor little girl was so scared the day we did her first x-rays, that we had to take them laying down because she wouldn’t stop crying. This is definitely not the Jamila you see today. She is confident, stubborn, always thinks she knows best, and is becoming quite a handful in all the best ways.
Jamila’s family first noticed problems as an infant when she missed hitting basic milestones like sitting, crawling, and standing. But she eventually achieved them all, so the family didn’t take her to the doctors until her spine problem became severe. Thankfully, her family found us. By that time, her spine was compressing her stomach, so much so, that she was malnourished, weighing only 37 lbs at 12 years old. She’s the first 12 year old I’ve ever met, who was suffering from osteoporosis, a disease, usually found in seniors, that weakens your bones.
We were lucky enough to find Dr. Lieberman from the Texas Back Institute. We brought Jamila to Texas and her surgery is hopefully the first in what promises to be a long partnership. Jamila lived in Texas almost 5 months. While there, she fell in love with shopping, Halloween, and KFC. Now, she is back in Tanzania with her family and is in school for the first time in almost 4 years. She has a lot of catching up to do and it was with a fight to get a 13 year old enrolled in elementary school, but we did it!
Jamila’s spine is great. Now, we will be with her for the next part of her journey and recovery from continuing to gain much needed weight, learning how to behave now that she’s physically strong enough to leave the house, and catching up in school. She’s got a long way to go, but with her stubbornness, I know she can do it. No one is ever going to tell this girl that she can’t do something...ever again!
You can help us make miracles happen - be a Stand Tall Warrior by donating today. Donate now.
On the 10th day of Stand Tall Christmas
What made Andrew so different is that he was angry. He was angry at everything and everybody. When we sent him for surgery, he wouldn’t…
We are proud to introduce Andrew
Andrew went for surgery at the same time as Nalari and David, who you got to meet earlier in the 12 days. So why would we share his story...because we are so proud of him!
As far as spines go, Andrew’s was bad, but nothing out of the ordinary for the kind of kids we see. His story was very similar, years in and out of hospitals, years bullied and picked on by his community, years with no hope of any future. It’s a heart-breaking state of affairs when this becomes “normal”.
What made Andrew so different is that he was angry. He was angry at everything and everybody. When we sent him for surgery, he wouldn’t listen to the nurses and doctors and literally got in fist fights with other kids at the hospital. He is the only child that we almost sent back to Tanzania without getting surgery because he wouldn’t follow his treatment plan and his bad behavior. I called him and told him that as much as I wanted him to have surgery, if he didn’t want it and wasn’t willing to do what was required, we could give it to someone else. That day he changed. He started following his treatment, and was in surgery 2 weeks later. I thought we had turned a corner.
Then, he went back to Tanzania. The minute someone said something to him about his back, he was in a fight. Keeping him in school was almost impossible because of his behavior. Thankfully someone told us about the most amazing man, Teacher Pius, who works at Tusiime Primary School, one of the best schools in the country. I had a meeting with him and was very honest about both Andrew’s amazing potential and his bad behavior getting him in his own way. Pius not only helped us get Andrew admission into this elite school, but took Andrew under his wing, even allowing him to live with his own family during breaks for extra support.
Meet Andrew today. Andrew is head boy at school, is 7th in his class academically, and hasn’t been in a fist fight in a whole year. It truly takes an entire community to get these kids where they can excel and thanks to help of Pius and Andrew’s teachers, he is doing just that. Today, Andrew’s fighting instinct is a gift that will continue to propel him forward.
You can help us make miracles happen - be a Stand Tall Warrior by donating today. Donate now.
On the 11th day of Stand Tall Christmas
Most you spent the year learning about Zainab and her very long, arduous journey to health. The short version goes like this:
Zainab, The greatest achievement of 2019!!!
Most you spent the year learning about Zainab and her very long, arduous journey to health. The short version goes like this:
Her family first took her to the doctors for a curve in her spine when she was around 7 years old. The doctors recognized scoliosis and gave her a brace. She wore different braces on and off for years and as you can see by the pictures, she just got worse and worse. By the time she found us, she was 15 years old and really miserable. We put her on the waiting list right away, but then she spent 3 more years waiting for surgery. Every time it was her turn, a child more critical came into the program and she had to wait again. Until, we had no choice, if she didn’t go this year, she may never be able to receive surgery. Even at the hospital, it was a dicey situation. She had severe malnutrition and her body just didn’t want to gain weight. She also had issues with her lungs because they were compressed by her spine and her breathing had to improve. The surgeon prepared her for surgery three times only to cancel each time worried about complications.
But the 4th time was the winner!!! She underwent a successful surgery and finally, after 8 months in the hospital, she returned home to her family in July at the age of 19 years old. Can you imagine 8 months, in a foreign country, away from your family? She missed birthdays, holidays, even her sister’s wedding. But it was all worth it when you see the amazing woman that she is today.
Her physical health is nothing short of amazing. Zainab’s surgery is the most complicated that we have ever endeavored to help with and her resounding success is nothing short of a miracle.
She’s only been home a few months and is still not used to her new life. I was speaking with her recently and she told me that she decided she no longer wants to be an accountant. I asked what she wanted to do instead and she gave me the best answer. She has no clue what she wants to do because she has never had so many options in life before. She needs time to figure it out.
The first greatest gift we could give to Zainab is her life. The second, is an abundance of choices and opportunities that she never had before. I want her to try everything that she missed over the years until she figures out what she truly loves. Then, I hope that she will pursue it with all her heart.
You can help us make miracles happen - be a Stand Tall Warrior by donating today. Donate now.
On the 12th day of Christmas
We have so many dreams for the future. Some are about changing spine care throughout the whole country, some are about the treatment of people with disabilities. But, let’s talk about the next year or so…
It’s time to dream about The Future
As the only organization working in Tanzania with this type of condition, we have so many dreams for the future. Some are about changing spine care throughout the whole country, some are about the treatment of people with disabilities. But, let’s talk about the immediate future, the next year or so…
You read on Day 7 about Dr. Massawe, a Tanzanian doctor and our plan to increase his skills so he can start helping his own Tanzanian citizens. This is an important first step.
The next dream is to host a scoliosis screening program for a week in Tanzania, maybe even as soon as this summer. The dream is to start identifying more cases early and get them bracing, physical therapy, and monitoring. Let’s help more and more kids before they get to a life-threatening condition.
The final piece to this puzzle, and by far the most adventurous of our goals, is to bring a team of surgeon from the US to Tanzania. They would come for two weeks and perform 15 surgeries during that time. That would provide surgery for almost every child on the waiting list in one trip. This also would allow us to continue training Tanzanian doctors, nurses, and other healthcare providers in the identification and treatment of children with a variety of spinal deformities.
There are no shortages of opportunities. Now, we need the support to make this happen. This includes talented skilled people, resources, infrastructure, and capital. Sometimes it feels down right impossible. But then I see the faces of each one of these children, and then I see the children on the waiting list, still waiting...It’s going to take a lot of work, but I know we can do it. We have to! I hope you are there with us every step of the way!
You can help us make miracles happen - be a Stand Tall Warrior by donating today. Donate now.
The 12 days of Stand Tall Christmas
For a special holiday edition, we wanted to highlight all the amazing moments from the past 4 years and a few challenging ones too. Read 12 beautiful stories, one for each day of the Christmas season.
Stand Tall recently celebrated it’s 4th anniversary. For a special holiday edition, we wanted to highlight all the amazing moments from the past 4 years and a few challenging ones too. Read 12 beautiful stories, one for each day of the Christmas season.
UPDATE: Nalari and Zainabu's time at FOCOS
On Monday, November 19th, Zainabu and Nalari flew out of Dar Es Salaam, Tanzania, with Agness, the Stand Tall International caretaker to FOCOS hospital in Ghana. Stand Tall International has partnered with FOCOS (The Foundation of Orthopedics and Complex Spine) for 4 previous surgeries, including Nalari’s first spinal fusion. We’ll touch on why Nalari had to return to FOCOS below.
On Monday, November 19th, Zainabu and Nalari flew out of Dar Es Salaam, Tanzania, with Agness, the Stand Tall International caretaker to FOCOS hospital in Ghana. Stand Tall International has partnered with FOCOS (The Foundation of Orthopedics and Complex Spine) for 4 previous surgeries, including Nalari’s first spinal fusion. We’ll touch on why Nalari had to return to FOCOS below.
First, we want to thank everyone who contributed to Stand Tall in 2018. Because of your efforts and donations, Zainabu is going to have the spinal surgery she has waited for her entire life. Unfortunately, the two times Zainabu was supposed to go for surgery previously, another child that was more critical bumped her at the last minute. But in early 2018 we discovered, Zainabu couldn’t wait any longer, that’s why it was urgent for us to raise the funds we needed to get her on a plane. The surgery will allow her to breath, eat, walk and finally attend school again.
In severe cases of scoliosis, halo-gravity traction may be an important part of the treatment. The use of halo-gravity traction removes the impact of gravity on the spine deformity, elongating the spine and stretching out surrounding soft tissue. Zainabu had a curve of 165 degrees, which meant halo was necessary.
The first week of December, Zainabu received her "halo,” the ring device that is held in place on the skull using several pins. Once the ring is attached, traction is immediately applied through the halo, and gradually increased according to the direction of the physician. Below you can scroll through pictures of Zainabu through out the “halo” process.
On February 1st, over two months after her arrival in Ghana, Zainabu’s doctors informed us that her traction is nearly complete. The one major factor holding Zainabu back from receiving surgery immediately, is the fact that she is underweight. Since her 165 degree curve was crushing her organs, she’s never been able to eat enough to maintain a healthy weight. The next few weeks Zainabu will focus on putting on weight, weight that will allow her body to handle a major surgery as well as recover properly and in a timely manner. More updates on Zainabu to come.
As for Nalari, she had to return to Ghana with Zainabu and Agness because since her surgery in 2015 her spine had begun to curve again. This is not atypical when it comes to spinal fusions on children. The first surgery that Nalari received allowed her to grow normally. She actually began to grow more than the “growing rods” would allow. She had to return for a second time for longer rods.
In early December, Nalari had her second spinal surgery. She was up and walking two days post-operation. She struggled at first but with the encouragement of the incredible doctors at FOCOS and Agness she was able to stand on her own and walk within a week. She was feeling like herself on Christmas and had the Nalari smile we know and love stretched across her face. She was discharged from FOCOS at the end of January and will be returning home to Tanzania in the first week of February.
Scroll through the photo carousel below.
For daily updates, like us on Facebook or follow us on Instagram (@standtallinternational). If you would like to send Zainabu a personal message to keep her spirits up you can email us at info@standtallinternational.org or feel free to send hand-written letters to our mailing address, 1733 S. Mansfield Ave, Los Angeles, CA 90019.
Jamila's Standing Tall
Jamila is a hilarious little girl (which you can tell from the videos) who loves to tell jokes and hang out with her family and she has a big family with lots of aunts, uncles, and cousins. She dreams of going to school, playing outside, and doing normal kid things. All those things, that are not possible right now because of her back.
Jamila took the next step in her journey on August 13, 2018. She arrived at the Dar es Salaam airport with 35 different friends and family members, who all came to wish her good luck on her trip. This was Jamila's first time ever on a plane. She was unbelievably excited and greeted every flight attendant, pilot, and helper with a huge, "Hello!" During the long 41 hour plane trip, she got to meet the pilots and explore the cockpit. She was accompanied by our wonderful caregiver, Agness Athumani, and co-founder Masha Balovlenkov.
When Jamila landed in Plano, Texas, she and Agness lived with a wonderful and generous host family who showed the girls all the different things America has to offer; Kentucky Fried Chicken, soft serve ice cream, the Texas State Fair and trick-or-treating. For Halloween she dressed up as a princess.
Her surgery was performed in September at the Texas Back Institute by Dr. Isador Lieberman and his team. The surgery was a huge success. Jamila came out of surgery 5 inches taller and went back to Tanzania 15 lbs heavier.
Although surgery went well Jamila's work was far from over. Recovery was difficult, but she worked at it everyday. She spent 7 days in the hospital relearning how to take each step. She started with just a few steps, but eventually was seen with her walker moving up and down the hallways of the hospital. After leaving the hospital, she spent the next two months in the care of Agness and her host family where she improved more and more each day until November when she finally got to go home and see her family for the first time in 3 months.
Since heading home, Jamila loves to boast that she is finally taller than her little sister. She spends a lot of time playing and practicing her new English language skills. She just recently started at school for the first time in six years! She's attending Good Samaritan, in Dar es Salaam, Tanzania. Her favorite part is being able to leave the house and make friends again. We are so excited for Jamila and can't wait to see what she can achieve with her new healthy spine.
Meet Zainabu
Zainabu is a beautiful 17-year-old girl and the only girl I’ve met whom actually dreams of being an accountant. In January, she is going to start her senior year of high school. She has so many dreams and is such a fighter, but her trauma is the one thing holding her back.
I met beautiful, 17-year-old, Zainabu 2 years ago when she was 15 years old. During that trip to Tanzania, we met so many children with severe spinal deformities that they inspired the founding of Stand Tall International. Zainabu was one of those children. Unfortunately, the two times Zainabu was supposed to go for surgery, another child that was more critical bumped her at the last minute. Now, Zainabu can’t wait any longer. She has severe difficulty breathing, has challenges eating and digesting because her organs are so squished, and she hasn’t grown taller in 8 years.
Zainabu is the only girl I’ve met whom actually dreams of being an accountant. In January, she started her senior year of high school. She has so many dreams for her future. She is such a fighter, but her trauma is the one thing holding her back.
Zainabu’s family first noticed a problem with her spine when she was 6 years old. They took her to the local hospital. The doctors gave her a back brace to wear and told her that as long as she wore the brace she would “grow straight.” Well, as you can tell by the pictures, she did not grow straight. After almost two years in the brace, they returned to the hospital and at that point, the doctors realized there was nothing they could do and told the family they should look outside of the country for help. Imagine not having access to local doctors who can help. That's where Stand Tall International comes in.
Zainabu needs our help. I can’t imagine a child dying because we couldn’t raise enough money. All the money we raise will go towards her transportation to FOCOS in Ghana, her surgery and recovery. Please help spread the word. If we work together we can save her life.
You can contribute to Zainabu's GoFundMe by visiting https://www.gofundme.com/zainabu.
$10,000 Save-A-Life Pyramid
It’s a pretty simple, really. Below you will see a graphic with 150 envelopes. Each envelope has a number. That number represents a dollar amount. Once the dollar value has been donated, the envelope gets crossed out. The fundraiser continues until all envelopes are crossed out.
Sounds simple right?
It’s a pretty simple, really. Below you will see a graphic with 150 envelopes. Each envelope has a number. That number represents a dollar amount. Once the dollar value has been donated, the envelope gets crossed out. The fundraiser continues until all envelopes are crossed out.
Sounds simple right?
As you can see, we also have a physical wall of envelopes in our office as well. But since we interact with the majority of you online, we needed to come up with a digital solution.
So here’s how it’ll work:
Step 1: Join our Facebook Page, here.
This way, you can follow the progress and see which envelopes are available!
Step 2: Choose an envelope that has the cash value you want to give or raise.
– Make sure the envelope you want is not crossed out.
– If the envelope is crossed out, chose multiple envelopes that equal the amount you feel led to give or raise. Example: If you know you want to give or raise $100, you could choose many different envelope combinations to equal the sum of 100.
*Note: Your envelope will not be held or “claimed” while you are raising the money for your envelope. Our aim is to raise money fast, so the faster you raise your donation, better are the chances that you will meet your donation goal. Your money will not be counted until it has been received, posted, processed, paid, etc…
Step 3: Give or raise cash fast.
– Start your fundraising! We are excited to have you involved in this journey with us. By extending this fundraiser to your co-workers, extended family, roommates, hall-mates, school friends, Sunday school class, Mops group, and everyone you know, you give them the opportunity to participate in this beautiful journey of hope for a child living in Tanzania. So, get creative. Host a bake sale. Skip on eating out for two weeks. Get all your co-workers to give you $10. There are lots of ways to raise these amounts of money fast!
– Donate the cash value of your envelope by:
- using the DONATE button below
- using the “send money” feature on PayPal (use email masha@standtallinternational.org)
- sending a CHECK to Stand Tall International, 1733 S Mansfield Ave, Los Angeles, CA 90019
Step 4: Give yourself a high five and dance around the room because YOU ARE AWESOME!!
Right now, we have 4 children that have all been on the waiting list for one year. If we fill all the envelopes, one of the them will be able to receive surgery in early 2018.
Read the journey of how the 1st ever spine surgery was performed in Tanzania.