Today, our post is dedicated to Amy Reyes, the daughter of our columnist Catriona Moore, and her husband Eduardo Reyes. Amy is also the sister of Abby Reyes.
Devastatingly, Amy passed away suddenly last month, aged just 17. Today, family and friends of Amy will attend her farewell. It is not just a funeral, but a celebration of her short but significant life.
Amy had Rett syndrome, a rare disease that brought complex disabilities. Rett is caused by a spontaneous genetic mutation that affects mainly girls, with prevalence of around 1 in 10,000 births.
Most children and adults with Rett are unable to speak, walk, or use their hands. Breathing problems, feeding tubes, seizures, anxiety, gastrointestinal, and orthopaedic issues are common. Most people with Rett syndrome are severely disabled and will need round the clock care for life. Research has shown that people with Rett Syndrome do not have brain damage. They know and understand much more than their bodies allow them to show – but they are locked in, trapped by a body that cannot obey signals from their brain.
Reverse Rett
Despite all these challenges, if you have ever met or seen a photo of Amy, you will know her to be a wonderful, vibrant girl with a mega-watt smile, who was very much loved by her family and friends and who loved them in return.
Caring for Amy was made harder than it needed to be
Catriona’s work with SNJ and as Policy Manager for IPSEA, and that of her journalist husband Eduardo, are deeply informed by their experience of the education, health and social care systems as they did their best to ensure Amy had access to everything she needed. This was very often a frustrating experience, encountering officials who didn’t care (not all of them), and bureaucracy designed to confound, rather than cooperate, hamper rather than help.
In writing about her daughter, Catriona showed how despite her challenges, Amy wanted—and deserved—the same things as every other child.
…Non-mobile, non-verbal, partially tube-fed, prone to seizures and feistily opinionated, Amy requires a high level of special provision wherever she goes. But she is no less keen on doing fun and interesting things and spending time with other children than are her typically developing peers.
Fighting for my child’s right to have summer fun. Catriona Moore, SNJ 2017
“Then a list of all the things people like and admire about her. ‘My eyes, and the way I can talk with them.’ ‘My strong opinions on what I like and dislike.’ ‘My extreme love of music, especially the piano.’ And a detailed section on how to help her if she’s unhappy. ‘I prefer to be given quiet time and space to feel better, and don’t usually respond well to people who try to entertain me when I am tired and over-stimulated.’ (Her and me both.)”
Catriona writing about Amy’s hospital passport
“We thought she’d go on forever”
We asked Catriona to write a few words about Amy:
“Our daughter Amy was a girl with lots of complex needs, but somehow we thought she’d go on forever. She was so resilient and brave, the way she dealt with major surgeries and endless hospital appointments and a body that just wouldn’t work for her. For a girl who couldn’t talk, she was a brilliant communicator, letting us know what (and who) she liked and what she found tiresome.
“We weren’t ready to lose her. But the outpouring of love and support for our family in the last few weeks has blown us away. So many cards, messages and wonderful thoughtful things from people who’ve taken the time to let us know they are thinking of Amy and of us. There’s a lot of goodness in the world.
“Organising her funeral has brought me comfort and even a little joy, as I think about her and remember how fierce and funny and fabulous she was. It feels important to celebrate her life and the impact she had. We will play her favourite Madness song “It must be love” and smile. Like so many other families of children and young people with SEND, we know we can do hard things”
Catriona Moore
If you’d like to read Catriona’s own obituary for Amy, you can read it here— but you may want to have a tissue handy
Donate in memory of Amy
As they say a loving adieu to their daughter, Catriona and Eduardo ask that, instead of flowers, anyone wanting to help pay tribute to Amy make a donation to Demelza’s Hospice, where Amy spent many happy hours.
Demelza delivers extraordinary care to extraordinary children who are facing serious or life-limiting conditions, throughout Kent, South East London and East Sussex. We’re here for them and their families with expert clinical, emotional and practical support at every step – from first diagnosis and for as long as we’re needed.
Our daughter Amy received respite care over many years at Demelza’s hospice in south east London. They took wonderful care of her there, and she had many happy times.
Catriona Moore and Ed Reyes
Amy Reyes, you will be remembered.
Click the button to be taken to their Just Giving page.
Catriona’s posts about Amy
- Fighting for my child’s right to have summer fun.
- My “control freak’s guide” for my disabled daughter’s dignity and care in hospital
- Parents of disabled children traumatised by the public bodies that should be supporting them
- Partnering with clinicians to reverse Rett, my daughter’s rare disease
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