Defying the Odds

Raising a Child With Chronic Illness in East Africa

Written By: Celesta Bargatze & Lawrence Ssemakula

Raising a child with a chronic illness is always hard. However, to do so with limited resources and access to health care can be nearly impossible. Such is the case for many parents in impoverished countries. Sickle Cell Anemia is a genetic disorder that more than 300,000 infants are born with each year. Statistics are scarce and likely greatly underestimated because around 75% of these cases are in Sub-Saharan Africa. This disease is caused by an inherited mutation in the DNA that causes proteins in the red blood cells to be sickle-shaped rather than round and pliable. Thus in affected individuals, many of their red blood cells (a main component of blood) are misshapen and clot easily or tear through small blood vessels. This can cause episodes of excruciating pain and ongoing issues. Illnesses and injuries take much longer to heal from, which is why anywhere from 50-90% of children born with Sickle Cell Anemia in Sub-Saharan Africa do not live to see their fifth birthday.

As devastating as this illness can be, supplementation, proper diet and medications can vastly improve the prognosis. Our dear friends Lawrence and Josephine have experienced this firsthand. Their daughter, Ssanyu Quinn, has Sickle Cell Anemia. She was diagnosed at a very young age and they have, with great faith, advocated for her every step of the way. Over time, we have worked with their family to provide continued education for her condition and guidance on which treatments would be most appropriate. Stateside, we evaluate her doctor reports, offer advice and suggest therapeutic interventions as well as sending monetary assistance so that they can access the care she needs. Because of this, and her parents' steadfastness, Quinn has done exceptionally well. At 17, she has already exceeded what her doctors thought possible and we hope that she will continue to defy odds.

She is an extremely bright young lady who hopes to study to become a doctor herself. Often, a hospitalization or need for treatment will come to the attention of the East Africa team and the bill is met within seconds. We have a deep and vested concern for Quinn to continue to beat the odds. Below, Quinn’s father, Lawrence Ssemakula, writes a letter about the care she’s received.

Dear friends,

Am writing to thank you so much for the support and assistance you have rendered to my daughter Ssanyu Quinn towards her medical needs.

The love of God that you have extended to my family is evident to us that your obedience to the LORD is exceptional.

I remember a few years back, in 2009, when my daughter was admitted to the military hospital where I went because I couldn’t access any other hospital. I asked a gentleman who was a soldier to help me so that my daughter can be admitted and get a blood drip because her blood levels had gone extremely down due to sickle cell disease that she has. The man accepted, he saw that she was almost passing away.

I recall this time because it was the LORD working through someone to help us. That story has been repeated so many times.

Recently my daughter was admitted again at a major hospital in the capital city. She had another terrible attack (She was in excruciating pain unable and to walk on her own. Her abnormally shaped blood cells had caused an obstruction restricting blood flow in parts of her body causing severe pain and had it not been treated quickly could have caused severe permanent damage). However, because of the nutrition we’ve been able to maintain, she didn’t end up getting a blood transfusion to keep her blood levels at normal. This was possible because you have been of great help to my family and showing us such great love by sharing what you have to help my daughter be able to access good health care and other health-related needs that need to be provided on monthly basis. Her poor blood circulation issue is under good management and she is continuing to access medical help.

Quinn has had a leg ulcer for 11 months. These wounds are such a great problem to children with sickle cell disease, causing them great pain day and night and stressing them a lot.(Our bodies rely on circulation of blood to bring clotting factors and pathogen fighting white blood cells to wounds. Because of Sickle Cell Anemia, Quinn’s wounds take much longer to heal and require much more care to prevent them from spreading infection and requiring serious intervention like amputation.)

One of the ways that Quinn has learned to cope with pain is by expressing herself through artwork.

One of the ways that Quinn has learned to cope with pain is by expressing herself through artwork.

Apparently, the wound is healing very well and she’s been able to visit the Doctor whenever she’s required. She gets her monthly medication and supplements and it’s been such a great relief to us in many ways. Though we’ve had at different times to spend sleepless nights, but with your support, we’ve been able to stay calm and not worry so much but keep our faith in God.

I have seen parents who abandon their children many times, or the husbands abandon the wives and their sickle cell children, due to failure to manage these children, and having to spend a lot to take care of them because they fall sick very often.

As for me, I have chosen to trust the LORD because he’s been our help in times of trouble, a fully dependable provider in times of need and he’s our everything.

I pray for you each day and ask the Lord to be with you and continue to be near you all.

My wife is also very grateful and really thankful.

We love you so much.