We want to introduce you to our beautiful son Harvey who was diagnosed with a rare neuro genetic disorder, Angelman Syndrome, in January this year. Harvey is a remarkable young boy who possess a heart full of love, an infectious smile and an unwavering spirit despite the challenges he faces. Angelman is an extremely rare neurogenetic disorder that affects approximately 1 in 15,000 individuals. Angelman syndrome is characterised by developmental delays, motor difficulties, intellectual disabilities and a unique set of behavioural challenges. This means that at 16 months old Harvey is still learning to roll and sit independently, he is likely to be non-verbal or to have very limited speech and is at high risk of seizures which would further impact his development. But Harvey isn’t just those challenges, he brings so much to our lives and to those around him. Harvey has an infectious joy that radiates from within in, brightening the days of all those fortunate enough to be in his presence. His laughter is like music, filling our home with warmth and happiness. Having Harvey in our lives has taught us so many valuable lessons about gratitude and living in the present moment. Early intervention is critical particularly at Harvey’s young age as the brain is the most adaptable and capable of forming new connections in the first two years of life. Undertaking therapy and structured interventions at this young age can help shape neural pathways that support his learning and development for the rest of his life. These therapies and supporting equipment are very expensive and we are raising money to go towards these costs. We are currently fundraising to send Harvey to a NAPA a specialist therapy centre in Sydney, these three weeks of therapy will cost just under $10,000 for the therapy alone, not including the flights and other costs.
Artículos relacionados
