As some of you know, Chris and I lost our precious son Christian to a cruel genetic disease called Spinal Muscular Atrophy (SMA). He was just 6 months and 4 days old when he passed away peacefully in our arms at Dewsbury Hospital in West Yorkshire. Our hearts shattered that day, and life was never the same again.

Christian was so beautiful — with soft blonde hair, big blue eyes, and a cheeky smile that lit up every room. He brought sunshine, joy, and boundless love into our lives in a way that words can never fully express. Though his time with us was heartbreakingly short, we feel so blessed to have known and loved him. He will always be our little boy, forever held in our hearts and memories.

Chris joined our beautiful boy Christian on 18th February 2021. Though the pain of losing them both is immeasurable, the love they gave me continues to guide and sustain me

SMA Charity

During that incredibly painful time, Spinal Muscular Atrophy UK was there for us. Their support meant the world — and still does. They created a beautiful way to honour and remember children affected by SMA through their Angel Fund. Anyone can donate or raise money in their child's name. When an Angel Fund reaches £5,000, a star is named in that child’s memory. Christian’s Angel Fund was one of the first to reach this milestone, and his star — named Christian — now shines in the constellation Cygnus. It was registered on 25th October 2004, a year after he was born. Knowing there is a star shining in his name brings comfort, even in the darkest moments.

My Challenge

The work of SMA UK continues — and so does the need to raise vital funds so they can be there for others, just as they were there for us. To honour Christian on what would have been his 21st anniversary, and to mark the charity’s 40th anniversary, I’m taking on one final big challenge at Altitude: climbing Mount Kilimanjaro. I leave London on Thursday 11th September and hope to return on the 21st, after attempting to reach Uhuru Peak — the summit of the tallest freestanding mountain in the world. At 5,895 metres, this will test every part of me — physically, mentally, and emotionally. With ongoing issues in my knees and an incredibly painful 'neuroma bursal' on my right foot, I am truly stepping out of my comfort zone. This seven-day trek will take me through rainforest, moorland, rocky scree, and steep climbs. I feel nervous, even a little scared — but I also will try my best to complete this challenge, in the knowledge I’m doing this for Christian. And I’m doing it for every family who has ever had to say goodbye too soon.

If you feel able to support my journey with a donation to SMA UK, I would be so deeply grateful. And to those who have supported me over the years — thank you. Your kindness and generosity mean more than I can ever say.

Sharon xx

About SMA UK

In 1985, 40 years ago, The Jennifer Trust was founded by Anita Macaulay, whose daughter, Jennifer, passed away just 7 months old after being diagnosed with SMA Type 1.

Anita was told the condition was so rare that only a handful of other parents in the UK had experience of it. There was no research being carried out and no organisations to offer support. Anita vowed to change that, with an aim to make sure no one had a similar experience to her. Through her commitment, The Jennifer Trust offered a very personal service to families and individuals affected by SMA and it is this legacy that SMA UK seeks to continue today.

After changing its name from the Jennifer Trust to SMA Support UK, the charity merged with The SMA Trust (a predominantly research-based organisation) in 2018, forming what is now SMA UK.

Within the last eight years, three treatments for SMA have been developed and subsequently approved by the NHS for use in the UK. The Charity played a vital role in funding research and advocating for the approval of these drugs by NICE and continues to represent the Community throughout ongoing reviews by ensuring that patients and parents have a voice.

With treatment, babies born with SMA have a good chance of survival and some of the first children to receive Zolgensma are now attending primary school. Most are still reliant on wheelchairs and have daily challenges, but the outlook is positive.

The earlier that SMA can be detected and treatment is started, the better, so SMA UK are now fighting to have the condition added to the Newborn Screening test here in the UK. This will mean than treatment can be given within weeks, not months to give the best possible chance to the affected child.