June charity news – Sebastian’s Action Trust
“We’ve become a family of families”
Becky Turnbull, 41, from Hampshire explains how Sebastian’s Action Trust has helped her son Ethan
Keeping two young children occupied over the holidays can be difficult for any parent. However, days out with my sons Finley, three, and Ethan, seven, can be a particular challenge. While Finley likes to run about, Ethan hates crowds and has no awareness of danger – he needs my constant attention to make sure he stays safe. Ethan’s behaviour also attracts a lot of staring, so I’ve had to develop quite a thick skin.
Ethan has a rare chromosome disorder and he also has a Global Developmental Delay (GDD). He was small at birth – just five pounds and 11 ounces – so when my GP referred him to a paediatrician at six weeks old due to problems with his head control, I expected them to say he would soon catch up. However, after tests, my husband Bob and I were shocked when the doctors said it looked like Ethan had cerebral palsy.
But as time progressed, they decided Ethan wasn’t behaving as they would expect if it was cerebral palsy. Then, at eight months old, more tests confirmed he had two bits of chromosome missing – known as micro deletion 16p11.2 and 17q12. We saw a geneticist and Ethan began physiotherapy and speech therapy.
Although it was a relief to be told Ethan didn’t have cerebral palsy, we felt like we had just been thrown on to another path of the unknown. As it’s a rare condition, not much is known about it.
We received an information booklet from a charity called Unique about possible conditions linked to Ethan’s two deletions – including epilepsy, autism, diabetes and kidney cysts – but they can’t tell you how likely they are to develop. His GDD also meant he was two years behind other children his age when he was diagnosed, but we didn’t know if that gap would widen or decrease as he got older.
At the moment, Ethan is similar to an 18- month-old in many ways – he needs help dressing and feeding, he still wears nappies, and he is completely non-verbal. He can walk but has trouble manoeuvring stairs and requires a buggy for long distances. He
is also not very sociable and will screech and flap and draw attention to himself if we are in noisy environments, which can be difficult.
In 2013, when Ethan was about four-and- a-half, a friend of mine suggested I go along with her to a ‘chill and chat’ evening at The Bluebells, which is owned by Sebastian’s Action Trust. I fell in love with the place straight away and it was amazing to meet other parents who understood what I was going through.
Since then, we have attended lots of events at The Bluebells and visited the family outreach hubs. It also hosts an annual mum’s sleepover, which I always attend. As we only live 20 minutes away from The Bluebells we drop in regularly to use the facilities – which include a beautiful sensory room, arts and crafts room and hydrotherapy pool, which Ethan loves. I have also had lots of help from a family support outreach worker, Carla, who will come with us on days out if I need an extra pair of hands.
Finding Sebastian’s Action Trust has been amazing, as it provides a space where we can
go as a family and do normal activities, but without the pressures for Ethan to behave in
a certain way. It’s nice to be around families who understand if Ethan’s not having a good day. They talk about being a family of families at Sebastian’s Action Trust, and that’s exactly how it feels.
Sebastian’s Action Trust – THE FACTS
- Sebastian’s Action Trust was the vision of a special nine-year- old boy, Sebastian, who launched it just days before he died of cancer at Christmas in 2003.
- Sebastian’s aim was to provide a place where families of seriously ill children could holiday together away from the rigours of hospital life.
- The Bluebells, the trust’s respite house in Hampshire, opened in 2011.
- The trust now also has two family outreach hubs – one-stop shops where families can go for advice and support.
- Visit sebastiansactiontrust.org
BIG GIVE UPDATE
Sebastian’s Action Trust raised £27,000 in The Candis Big Give. The money will be used to run two family outreach hubs, which provide a one-stop-shop service to families with seriously ill children, where they can go for support and to meet others in similar circumstances.