EVERY parent believes their child is one in a million but for a Dickens Heath family their three-year-old is one in two million after he was diagnosed with a rare genetic condition.
At just one year old, Seth Reilly was diagnosed with Alexander disease (AXD) which left him unable to stand or talk.
The brave youngster has found his own way to communicate – through picture cards, emotion, noises, body movement and facial expressions.
And he spends time every week at Acorns Children’s Hospice in Selly Oak at a play group for children and parents.
The hospice also provides therapeutic activities including crafts and even session his parents and big sister Nancy and brother Ethan can enjoy with him and some activities just for them to have some respite.
As a way of saying thank you to the hospice Seth’s mum, Claire, teamed up with her friend Julie James to host a children’s fun run around Dickens Heath village green in honour of Seth and all the children being cared for at Acorns.
The runners, dubbed ‘Seth’s Avengers’, will be limbering up on August 31 in a bid to raise £3,000 for the hospice.
As Seth’s Avengers cross the finishing line they will be presented with a medal which they can choose to donate to a child at the hospice.
Claire said: “This event is an opportunity to nurture the empathy in our young ones to acknowledge the invisible achievement of others, share the joy of a win, connect and stand beside fellow hero’s whose effort to keep a lifetime.
“The effort and the energy that goes into living. Local children will start the race but the receiver of their gift will continue their brave journey.”
Dickens Parish Council have been in talks to make this event an annual one in honour of Seth.
AXD is a mistake in one gene in the body which happens happens very early on in pregnancy but presents itself at different times and very differently in each individual.
The condition is a life limiting and there is no cure.
Claire said: “When you have children you expect to go through their phases of life towards some independence and I guess the impact on us as parents is that independence will not come during Seth’s lifetime and overtime Seth’s needs will become greater but at least this means we have him.
“The unimaginable happens, you grieve what would of should of could have been and you live with a constant fear of what is around the corner and yet the perspective it gives you keeps you upright and grounded and grateful for every moment. Seth can return from a hospital stay and we are full of joy and gratitude in that moment and quickly put behind us the panic and the worry of the days before.
“People say I don’t know how you do it, but it was not a choice and just because we keep going, it does not mean we don’t hurt we just hurt and keep going.”
Claire said has learned patience, persistence, compassion, empathy, and to be authentic in any setting following Seth’s diagnosis.
Claire added: “Seth is a hero! He may not be able to run a race or climb a tree but he faces his health challenges everyday and shows up with resilience and courage despite it all. The love I know, few experience. It’s care free, it’s reckless, it’s raw, it’s pure.
“When a mother knows what is to come she loves hard, fiercely, chaotically absorbing it all. This is the only way to love your child whose delicate life is short.
“I have been blessed with a remarkable gift, a perfect soul who has taught me so much in his little lifetime. No time for should of would of could of, it will only rob me of today and I refuse to do that, for today is everything.”
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