The Repatriation Team are running the LLHM

We are raising money in aid of Momentum Children's Charity, and every donation will help. Thank you in advance for your contribution to this cause, that means so much to us.

I am Sonia, Jack's mother. Jack has Angelman Syndrome. Myself and my work colleagues will run The London Landmarks Half Marathon 2023 to raise funds for Momentum Children’s Charity. Running alongside me, will be Kieran, Alan, Andy, Siobhan, Tony and Ed. We would be grateful for any support you can give, whether donating, supporting on the sidelines, or amplifying this important message on social media or with your friends and family.

Angelman syndrome is a rare genetic disorder that causes developmental and neurological disabilities. It causes delayed development, intellectual disability, problems with speech, balance and seizures. Since the diagnosis, our life has been based on the belief that the cure is closer every day. Receiving Jack's diagnosis (by a Zoom call) in November 2020 was undoubtedly the hardest day of our lives. Hearing from the doctors that we would never hear Jack’s voice, that he would never walk, never be independent, and would need round-the-clock care was heartbreaking. The future we had imagined for our son was transformed overnight. His new future was uncertain and so to find some answers, we started to do our own research into Angelman syndrome. With our curiosity came the hope and belief that one day a cure could be found for Jack and for all the other people with Angelman.

Until then, our anguish has become a desire to provide Jack with everything that he needs (sometimes even a little out of our capabilities), but we will continue! It has been challenging. But every night we spend awake caring for Jack, all the hours spent in hospitals or doing physiotherapy, and all the terrifying medical emergencies are easily forgotten every time he laughs or seeks our hand for reassurance. In that moment, he is just our darling, loving son. That is why we are desperate to one day hear his voice, what funny things he has to tell us, and to see him walk unaided.

On our journey to achieving this goal, we’ve been supported by Momentum Children's charity. Momentum has helped us in numerous ways. They have partnered with NHS hospitals across Southwest London, Surrey and Sussex, so they can make sure every hospital experience is as positive as it can be. From the moment a family is referred to Momentum by one of the partner hospitals, their Family Support Team are there to help every step of the way, for as long as needed. Wellbeing is offered by access to support groups facilitated by a psychologist or one of the Family Support Workers. Being able to share your worries with other parents, can be a powerful way to help reduce feelings of loneliness and isolation. They understand that having an ill child can be all-consuming, and that sometimes you just need a little lift or something out of the ordinary to be able to escape the day-to-day struggles. This is where their trips and experiences come into play. Every family is unique, the Family Support Worker will take the time to get to know you, from favourite celebrities to hobbies and passions, your likes and dislikes or if you feel you could do with a helping hand at home. They do this so that when your child, or any member of your family needs a little lift, they are able to offer something is really beneficial, at a time when it’s needed most. Their respite breaks are free of charge (aside from voluntary donations) and are there to help support the emotional and mental well-being of families. Having a seriously ill child can often rule out a holiday for many families, so their well-equipped and close to home cabins are a good alternative. Bereavement support - should the unthinkable happen, the bereavement arm of the charity, Momentum Echoes, is there to support families through the heartbreak of losing their child.

To enable Momentum's invaluable work to continue, they need our help.

Any donation, no matter how small, will be greatly appreciated.

Help us to spread the word and share this page.

Thank you.

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