Our journey began in 2013, when our daughter Natasha was diagnosed with Fanconi anemia at the age of five after experiencing bone marrow failure. This was all new to us and very confusing. We did not understand how our daughter who was seemingly healthy had a life-threatening condition. We would later find out as we learned more about the condition that she was born with it. We were advised that she needed a bone marrow transplant. Quite sadly, there was no medical institution that could perform bone marrow transplants in our country and there still is not one. As we conducted further research, we discovered that not only was a bone marrow transplant a life-threatening procedure, but it was also very expensive. My husband, Eddie, and I decided that we were going to do everything within our power to give our daughter a fighting chance.
We began a fundraising campaign to raise $100,000 (USD) which was required for the transplant in India ($45,000 for the transplant, $35,000 for the donor and $20,000 for airfares and living expenses in India for the entire family for six months). With only two days before the scheduled day of departure to India, having raised $23,000, we received incredible news that a donor who wanted to remain anonymous had paid for the transplant in full ($45,000) and was ready to pay the $35,000 if any of us were not a match for Natasha. They also advised us that we could use whatever we had raised for travel and living expenses while in India. What a MIRACLE! Natasha had her life-saving treatment in India with no major complications and her brother, Raymond, who was three years old at the time, was the donor, a perfect 10 out of 10 match.
In 2015, we were blessed with our third child Nathan (meaning God’s Gift). Our adorable little boy was born with Fanconi anemia, bilateral club hands, an absent radius, no thumbs, an absent right kidney, and severe hearing loss. When he was only two months old, he had to undergo surgery as he had a right inguinal hernia. At six months he had corrective surgery (centralization of his right hand) and a year later, when he was one and a half years old, he had another one for his left hand. The surgeries Nathan underwent were supposed to cost us a total of about $40,000 and I am happy to share that Nathan benefited from free surgeries performed here in Zimbabwe by a team of plastic surgeons from the University of San Francisco. We will forever remain grateful and indebted to them for selfless acts and amazing work. Nathan has full use of his hands and is thriving, a budding artist with great talent.
In 2018, when Nathan was three and a half years old his bone marrow failed, and he underwent a bone marrow transplant. He endured numerous infections such as a terrible adenovirus (a common virus that causes a range of illness and cold-like symptoms), battled with graft-versus-host disease because his brother Raymond was a haplo-identical match (half match), and Nathan had to be in ICU (where at one point we were told to prepare for the worst). We kept hope and faith alive and are happy to share that this little boy fought with such bravery and resilience. We are happy to share that our children Natasha, Raymond, and Nathan are in good health, thriving, doing well in school and continue to inspire so many people, young and old.
You can learn more and follow Natasha and Nathan’s journey on Facebook.
Above: Natasha going through transplant, Natasha with her mom and brother, with her teddy bear
Following our ordeal, Eddie and I agreed that no parent should ever have to go through what we went through, so we founded and registered The Nate Foundation, an organization that supports children with Fanconi anemia and related conditions, their families, and their caregivers. When we faced challenges finding a preschool that would accept our son Nathan, we set up Caterpillar Clubhouse, a preschool that is open to children with special needs and fosters inclusive learning in mainstream school.
We are glad to share that our story has been a source of hope and inspiration to other patients with FA and their families. Through our organization, we have been able to help some children go to India for bone marrow transplants. We also provide psychosocial support and work together with medical personnel in our country to raise awareness on FA in Zimbabwe. We have done this work with minimal donor support as our government and most people in our country have limited financial capacity. However, we are excited that we received our first ever grant of $10,000 from FARF August 2021. This huge show of support will ensure that we continue to raise awareness of FA and provide support to patients, their families, medical personnel, and health facilities.
When we count our blessings, we count our children twice. What an honor it is to have beautiful, brave, and loving children. They have taught us so much, the biggest lesson being that no matter what life throws at you, fight. There is a blessing in the storm. Who knew that our story of pain and struggle would turn into a tale of beauty.
We have been called to serve, and diligently we shall. The greater vision is an Aplastic Anemia Treatment Centre, with a bone marrow unit, a learning center for children with special needs, research facilities and a resource library. Our journey of a thousand miles began with one step. We cannot wait to see how it will unfold for us, Zimbabwe, and Africa at large
Above: Nate in this hospital, with loved ones, and Raymond, the donor hero