The work of The Arsenal Foundation and the partners and initiatives it supports have touched the lives of a great number of people in a variety of ways.
The Arsenal Foundation helps to fund and support Haven House, a hospice that provides care for life-limited children and their families.
Chris Thomas, 38 and from Barkingside, is a lifelong Arsenal fan whose family discovered Haven House after a hospital visit changed their lives forever
Our daughter Annabelle suffers from Spinal Muscular Atrophy, which was diagnosed on December 23, 2016. She was nine months old and we were told she had 18 months to live.
SMA affects her muscles by not allowing the electrical signals to be fully sent through the nervous system, which affects her movement, breathing, swallowing – everything. We were told a cold could kill her.
We heard about Haven House through our community nurse. When we heard the word ‘hospice’ we immediately thought it was a place for palliative care, a place to die, but we now realise it is so much more than that. It’s a place to celebrate living.
Haven House provided us with respite support in the first few years when we were exhausted. This has moved into physiotherapy, which is essential to prevent muscle atrophy, music therapy/lessons, yoga and counselling.
Covid is our worst nightmare, though. Anything that affects the respiratory system is especially dangerous for SMA sufferers as their respiratory muscles are weaker. We’re used to sanitising and mask wearing when it’s flu season, but this was a whole new level. Being locked down stole from us the freedoms we relied on, so Haven House brought physio, music therapy and yoga to us at home through virtual sessions.
Haven House is the equivalent of a group hug from people within your community who understand the dangers and stresses inflicted on your family. The care and structure they offer helps build our family armour to go and face the world again. We feel safe there and the hospice at home service is incredible too. That a Haven House nurse can come to our house and give us respite when Annabelle is poorly and we can’t leave the house is invaluable.
The good news is that before Covid we heard about a new drug for SMA called Spinraza. Annabelle was the first girl in the UK to receive the drug, on a programme at Great Ormond Street. It has gifted us a positive future and we’re at the cutting edge of medical science – she is the first SMA child to regain her swallow, she doesn’t require breathing support and we’re working towards assisted walking.
We’ve gone from having a time limit on Annabelle’s life to a blank canvas. It’s a gift we want to build from to offer her all the opportunities we had as children. We want her to be part of a society that looks at all people as equal regardless of ability, creed or colour.
Above all we want to show her the world so she can decide where she wants to explore and the life she wants to create for herself. The only non-negotiable is that she supports Arsenal!
For more info visit havenhouse.org.uk
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