The story of Nancy
My name is Nancy and I am a mother to two beautiful babies, Harvey who is four and a half and my little one Sienna who has just turned 9 months. We live in Kenya. My son Harvey has a rare condition; SMA, in full Spinal muscular atrophy type 1, which is the more severe type of the disease. Harvey’s muscles have completely weakened from the illness including his eating and breathing muscles, this means he is fully dependent on the ventilator for survival.
I am Harvey’s primary care giver. Harvey’s disease makes it difficult for me to work due to the cost implications of a 24hour nurse, I look after him to reduce this cost. But this means attending family or friends functions with or without him is difficult, because you have to plan prior to attending. Having people come over to visit randomly is also a problem since we are trying to protect him from infections. Harvey’s also doesn’t get to eat all the yummy food and have the freedom to do things for himself, for example go outside and play anytime he wants like other children.
When we do get the chance to go outdoors Harvey loves it. He also likes watching cartoons, bubbles and having massages. He particularly enjoys seeing and hearing people talk around him. Seeing Harvey react to the colours and sounds around him brings me joy. Harvey’s rare disease has enabled us to meet a lot of new friends and I have come to learn a lot about other rare diseases out there as well as a lot about SMA and genetics. His rare disease has also enabled me to help others on a similar journey, giving them tips on caring for their children especially ‘homecare’ which is a new ground in Kenya.
I am also able to research better even on small things like sourcing the cheapest places to buy medical equipment and pass this information to others. I am confident to say that my family and few close friends have my back. I couldn’t have come this far without them. Rare disease has also played a huge role in giving me strength and changing my attitude, it’s always comforting to know someone else understands what you’re going through. I appreciate them for always checking up on us and trying to create time for a catch up.
*Find others with SMA on RareConnect, the online platform for people affected by rare diseases