December 9th 2021 is a day that Leo’s parents will never forget. Think about the worry that all parents experience when their 9-month old child isn’t well or isn’t achieving the developmental milestones. They seek medical support, looking for help and reassurance, but get a diagnosis of Angelman syndrome. They have no clue what that is and as they wipe away tears to read the blurry google results, phrases jump out ‘lifelong condition,” “never walk”, “ never talk”, “lifelong care”. “epilepsy”, “no cure”.
Jump forward to today and somehow, Leo’s parents, Jenny & Alex have come to terms with that diagnosis and with close friends Clare & Natasha have gone beyond what they can do for Leo, by founding a charity Spread Your Wings to support families living with Angelman syndrome across the country.
The condition is a rare neurogenetic condition, affecting 1 in 15,000 people, around 500,000 in the world, but the impact is enormous. Essential therapies are not fully funded, and many parents must reduce working hours or drop out of work altogether.
Spread Your Wings is here for those families, funding therapies, communication devices and sensory toys as well as running and supporting events for Angelman families to bring them together. A community that doesn’t need to explain, and everyone understands. We are also funding research, and indications are that a cure is possible in Leo’s lifetime.
We have shared the difficulties but not the joy of an Angelman child. Leo is irrepressible, a smile is never far away and the slightest encouragement makes him burst into laughter. He also gives the best hugs, but saves the very best for his Mum, Dad & sister, Isabella.
If you would like to know more about Angelman syndrome and the work of Spread Your Wings, please visit our website. If you can help us in any way, get in touch and if you can give any money, then please donate. We know that not everyone can do this, but please sign up for our newsletter or follow us on social media.
Registered Charity No: 1201650
