Sarah Henman
Sarah's Fundraising Page
Fundraising for Spinal Muscular Atrophy (SMA) UK
Story
Thanks for taking the time to visit my JustGiving page.
I am taking part in the Norwich Half Marathon to raise money on behalf of a charity that is very close to my heart - The Jennifer Trust for Spinal Muscular Atrophy. This charity is the only national charity that is dedicated to supporting people affected by SMA and invests into the causes, treatments and eventually a cure for the condition.
Last year a close friend of mine lost her beautiful baby boy to the disease at only just under 5 months old. This is her story.......
Leo Isaac Smith was born, weighing 7lb 4oz, on Tuesday 5 May last year. He arrived a week early via a planned C-section. He quickly cried a cute little cry and, when handed to us, looked like a mini, more newborn version of his big brother Luke, born three years earlier.
Early concerns
We'd had lots of worry during the pregnancy as the first scan picked up a greatly increased nuchal translucency (thickening of the skin on the back of the baby's neck), giving us a 50 per cent risk of a major abnormality. Subsequent tests and extra scans over several stressful months had not picked up any problems but at three weeks old the health visitor expressed concern that Leo wasn't moving more and seemed "a bit floppy". She sent us straight to see a GP who didn't seem overly concerned. He offered to refer us, but we planned to go away for a special family occasion so he suggested we make another appointment when we got back. Fortunately we went.
Many people met Leo over those special couple of weeks. However as five weeks rolled into six and Leo still wasn't lifting his head, and his feeding and weight began to drop off, we returned to the GP for a referral, accepting that there was a problem. Against the GP's advice, the following week I went back to information that, being a health researcher, I had found during the pregnancy about potential problems linked to increased nuchal translucency and explored conditions that did not appear to have been eliminated by the tests and scans. There it was - Spinal Muscular Atrophy (SMA). As I subsequently read stories about babies with the severest form of SMA (Type 1), the sickness in my stomach grew. It was the commonest genetic condition causing death in babies and young children and with no treatment or cure most babies die within a year, with average life expectancy being seven months. When my husband returned home that night, I said as I looked at our beautiful and seemingly perfect sleeping baby "I think we're going to lose him", and sobbed like I never had before. After several days of not eating, not sleeping and functioning on autopilot as I continued with pre-arranged events whilst constantly fighting back the tears, when Leo was exactly eight weeks old we finally saw the paediatrician. He happened to be a chap I’d worked with over the last year, and so began a series of serendipitous things, along with the support and prayers of so many people, that helped us cope with what followed and accept that however hard to take our situation was, it was somehow meant to be.
We waited a tortuous month for genetic test results confirming the diagnosis, despite tests having been brought forward when we realised that my dad’s sister Jillian, had died aged 12 from SMA (Type 2) 40 years earlier.
Fears confirmed
The afternoon the paediatrician called with the results, when Leo was nearly three months old, was like many that summer. I was at a children’s outdoor theatre event with Luke, his friends and their mums, keeping myself busy, making sure Luke had a great time and giving Leo all the experiences I could. What else could we do? The confirmation of SMA was ultimately a relief, finally allowing us to share what we had largely kept to ourselves and access further help. This included the Jennifer Trust charity (www.jtsma.org.uk) which supports families affected by SMA. They promptly sent us information and Leo a toy pack full of fibre-optic lights, projectors, musical and tactile toys which helped make bathtime and bedtime particularly special from then on. Continuing with the serendipity, our friends who were developmental psychologists talked through with us how to explain to Luke what was wrong and what would happen to Leo. We were also friends with one of the local hospital chaplains, and he and our vicar conducted Leo’s very emotional christening at our church the last weekend in August and provided great support and insight into Leo’s final hours and beyond.
On his good days, like the Sunday after his diagnosis was confirmed when we’d arranged a photo shoot to capture special memories as a complete family, it seemed like Leo could live for months. On bad days Leo grimaced and cried his by then almost silent cry, as presumably he struggled to breathe and clear the constant gurgle in his throat. At around four months, just when babies are normally getting easier, everything was becoming noticeably more difficult. Nights were increasingly disturbed as every couple of hours Leo seemed to need his position changed. As he increasingly failed to gain weight and took in air as he fed, Leo became more reliant on his feeding tube, initially fitted to allow top ups to and back up for the breastfeeding I battled on with right to the end. However, the extra-rich formula we had to give him, and eventually even expressed milk, started to make him sick.
During early September Leo also had two episodes where he suddenly stopped breathing. Both times he was blue, unresponsive and even more floppy than usual but I somehow managed to bring him round as my mother’s instinct kicked in. Amongst all this, we found ways to adapt, cope and enjoy to the full our final weeks with Leo, every day after these episodes seeming a bonus. With my parents staying, we enjoyed trips to parks, the seaside, the zoo, a transport museum and on a river boat. We took great comfort in the fact that Leo was not missing out compared to other babies his age.
Last days
By September I had largely come to terms with the fact that Leo was going to die. I still wasn’t sure if or how I would cope, having been fortunate not to have any close experiences of death in my life until then. Thankfully Leo didn’t greatly suffer. He died peacefully in my arms, aged nearly five months old, just before midnight during our first emergency visit to hospital with him. All close family got to the hospital to say goodbye to him, despite coming from far afield, and he even opened his eyes briefly for Luke. He was confirmed dead from respiratory failure soon after midnight on Sunday, September 27, last year. I’m sure Leo is well-looked after with what I like to think of as his little soulmate Saffron Middleton (www.justgiving.com/saffron-rose-middleton), who was born and died from SMA almost exactly a month after him, and all of the many other SMA angels.
In many ways we felt very fortunate in our experiences with Leo compared with many families affected by SMA, who need much more external and longer term practical and emotional support. For this reason, following the whirlwind of Leo’s funeral, we set about fundraising and with future events planned we are now heading towards £20,000.
Above all, from Leo’s story I hope – however hard things seem at times – we can remind ourselves to enjoy every day that we have with our little ones.
Jane
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So please dig deep and donate now - Sarah xxx