Peťulka turned 4 this year. Last year, doctors diagnosed him with Duchenne muscular dystrophy (DMD). This disease is very progressive and incurable. In essence, his little body cannot produce the dystrophin protein, without which muscles cannot function. The outlook for Peťulka’s future is not at all encouraging. According to doctors, by the time he starts school he will be in a wheelchair. Over time, this illness will take away his ability to walk, all movement (he will need 24-hour care), and eventually even his breathing and heartbeat. This disease also affects brain development. Péťa does not speak, and signs of autism spectrum disorder are appearing in him.
At the moment, the illness affects him “only” mildly in terms of walking and communication. He trips, climbs stairs by leaning on his other leg, has more difficulty getting up from the floor, and gets tired more quickly, so we often use a medical stroller. We regularly visit a physiotherapist and a clinical speech therapist, and we travel for hippotherapy, all on the recommendation of specialist doctors in an effort to improve Peťulka’s future quality of life. Péťa communicates mainly by pointing and babbling. If he needs something, he points to it. Sometimes we can even manage without pointing, when he can at least say the given word to me in his “language.”
My priority is to make our home a safe environment for my son. The entire apartment must be renovated so that it becomes barrier-free. Replacing the floors (because of the weight of the wheelchair), removing thresholds, widening door frames, adapting the kitchen, but above all adapting the toilet and bathroom. For me as a single mother, this is a huge expense, so I am trying to raise funds and prepare for the inevitable.
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