Four-year-old Henry lives in Suffolk with his mum Claire, dad Paul, and brother George, aged six.
Henry has a rare genetic neuromuscular condition called Spinal Muscular Atrophy.
Spinal Muscular Atrophy (SMA) affects the motor nerves in the spinal cord, causing progressive muscle weakness throughout the body.
Henry and his family have been receiving care and support from EACH at The Treehouse since Henry was 18 months old. This is their story, told by his mum Claire…
Henry started to lose head control, became floppy to hold and failed to reach any motor milestones from 4 months old. After months of ongoing investigations and tests he was diagnosed with SMA at age 1.
Henry’s muscles are not strong enough to allow him to crawl, stand, walk or run so he uses a wheelchair for mobility. Muscle weakness caused by SMA also affects the ability to chew and swallow so Henry is unable to eat or drink enough to maintain a healthy weight, grow or fight infections. He has a gastrostomy to allow top-up tube feeding every day.
The respiratory system is also affected by SMA. Henry is unable to expand his ribcage and so he can only breathe using part of his lungs. He cannot cough effectively and so a typical cold is always at risk of turning to pneumonia.
Henry requires regular physiotherapy every day to help stretch out and manipulate his muscles, many of which he cannot move himself, to prevent them from tightening, wasting and becoming painful.
We started using EACH services around 3 years ago. Since then we have attended many events as a family, including Treefest, Carols by Candlelight, Disney night, Panto character events and craft mornings.
The Treehouse garden provides an exciting and independent environment for Henry, a wonderful opportunity to explore the woods and play on the wheelchair-accessible playground equipment.
Hydrotherapy at The Treehouse is an essential part of Henry’s physiotherapy routine. In water Henry is weightless and free to move parts of his body and work different muscles that normally he cannot. The staff take the time to listen and follow Henry’s lead. They know what he enjoys and work hard to ensure his sessions are fun and engaging; we always have a giggle together! They take great care in ensuring that Henry is safe, comfortable and happy.
Henry also receives music therapy, which has been hugely beneficial. It has helped boost his confidence and ability to express himself, and enables him to explore and increase his understanding of different musical instruments and sounds. Henry has enjoyed many group music sessions with Ray, the Music Therapist at The Treehouse. Ray is incredibly talented at engaging a child through music, whatever their ability. It is lovely to see the children interact with the instruments in their own unique way, getting so much pleasure from music. Sessions incorporate a mixture of relaxation and therapy - both physical and cognitive.
My favourite music therapy memory is one which was superhero themed; where Henry and his brother George had a fantastic morning bashing on the drum kit dressed as Superman and Batman while Ray followed their lead on his keyboard!
I have been involved in the choir (now called VoicesAloud) since we first started coming to EACH. Being part of VoicesAloud has allowed me to meet others in a similar situation; people who understand first-hand and who can advise. For example, the process of accepting and coping with Henry’s gastronomy was helped hugely by the guidance and support from other parents, for which we will be eternally grateful.
It can be very lonely being a parent of a child with additional needs, but coming to VoicesAloud helps me realise I am not alone and that there are other people going through similar difficulties, many of whom have experience and are able to help and guide. VoicesAloud allows me time to myself, to ‘escape’, without the usual worries or fears. This is my time out, to do something just as me - not as a mother or a physiotherapist or as a nurse or a carer.
I think it’s important to recognise that EACH does not just support the child; it also cares for the wellbeing and health of the whole family. Henry’s brother George is always invited and included in every event. They also hold regular sibling days which provide fun, engaging activities and crucial emotional support for the children living with a serious condition in the family.
My most treasured EACH memory is from one of Henry’s hospital admissions. He went into respiratory distress overnight and required intervention to save his life. As dawn broke, we began the next day in a high priority isolation room surrounded by yet more machines and tubes. Henry was a very poorly little boy in a very large hospital bed and it broke my heart to watch him lying there when he should have been at his nursery Christmas performance. It was late December and nearly all hopes of Henry spending Christmas at home were gone. But our spirits lifted that afternoon when the EACH choir came to sing carols. It was so reassuring to see the friendly faces of other parents and staff who genuinely knew how we were feeling. Everyone was so kind, encouraging and positive - it built our hopes back up that Henry would get through it. They had most of the ward dressed in tinsel and Christmas hats, singing, shaking bells and spreading some much-needed festive cheer! And happily, Henry made it home in time to hang his stocking up on Christmas Eve.
The Treehouse provides a nurturing environment through its services and events. The staff at EACH have supported Henry’s therapy, engaged him and helped build his confidence. Without EACH we would have felt more isolated in our community.
EACH has made us all feel part of an extended ‘family’. With support from EACH we are not alone with problems. There are always parents and staff with valuable expertise to help and advise at any time. We have felt welcomed, valued, encouraged, inspired, and supported in difficult times. We always leave The Treehouse feeling positive, stronger and thankful.
We know first-hand how crucial the services are that EACH can provide a child and their family. It has been a lifeline for us and we are so grateful to everyone who raises, supports and donates to this fantastic service. It is easy to fundraise on a local level without needing to organise large events; collecting in small ways is just as effective and important – for example, Henry’s Granny has a donation box and regularly collects small amounts of money, which all add up. Fundraising for EACH goes directly to an outstanding local service which benefits an entire family in need of support.