Maddison Sherwood, 5, was diagnosed at an early age with a severe form of SMARD (Spinal Muscular Atrophy with Respiratory Distress), an inherited neuromuscular disorder in which the nerve cells in the lower part of the brain and spinal cord break down and die, preventing the brain from sending signals to the body’s muscles. Maddison relies on a ventilator to survive and requires care 24/7 from two people at all times, which has resulted in both of her parents being unable to work.

She is ventilated via a tracheostomy owed to her diaphram being paralysed, she will not survive without a ventilator. Maddison has a very weak cough, this means that she needs her chest clearing three times a day, this involves a cough assist treatment along with her intense physio. Maddison has been provided with carers as opposed to respite this allows her to be able to attend school, always being accompanied by two medically trained professionals who can deal with any emergency’s Maddison may present, the main one being her tracheostomy becoming blocked .

Life can be very difficult for Maddison’s parents, Lidia and Jamie, as they try their very best to keep a “normal” life going for their other three children who absolutely adore their sister. A “normal” day would involve Maddison’s medical needs being addressed first, she would have her nebuliser, cough assist then her stretches and intense physio, then she would get ready for school. Throughout the day her carers would attend to her needs and perform her physio whilst at school. Then its home time to do it all again, rest/play time then ready for bed, when her parents sleep with one eye open! A day out for the family can be very stressful for the whole family, as Maddison needs a lot of equipment (two ventilators, suction machines, oxygen, trachy box and an Ambu Bag for manual resuscitation) to enable her to live.

When Lidia and Jamie were told to prepare for the worst back in May 2009, they refused to give up on their little girl, their love, care, dedication and nursing helped her eventually get home for Christmas. They feel blessed everyday that Maddison is still here.

This beautiful and inspirational little girl is truly amazing, showing determination, strength and will power to beat all of the odds, as 95% of children diagnosed with SMARD do not live past 18 months old.

Lydia, Maddison’s Mother, commented: “What the Charlie Cookson Foundation have done for us is truly amazing, with the little spare money we have thanks to CCF taking care of our financial burdens we are going to spend on some family days out, making beautiful memories. We are extremely overwhelmed by the kindness shown. Thank you all.”

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