Meet Lucy and Mohamed. The couple have three children, Maya, aged 14, Leela, aged ten and Jenna, aged three. In 2016, Leela was diagnosed with a mutation in the DYNC1H1 gene causing SMA-LED (Spinal Muscular Atrophy with Lower Extremity Predominance) and then in 2017 a separate neurological condition, which means that she is non-mobile and non-speaking. The family tried to cope alone until they found Noah’s Ark Children’s Hospice in September 2024.
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