Very sad news today with the passing of Myra Ali, a young woman with EB we were all privileged to meet and get to know.
Myra was extraordinarily dignified in the face of excruciating daily pain that blighted her entire life. Never once did we hear Myra complain about her illness and the wretched hand she and her younger brother had been dealt.
Myra was all about the opportunities that were available to her and like James Dunn before her, she realised that the pain relief had its limitations and the only way to conflict her EB was by distraction. To find things that she was passionate about and take her mind off the relentless pain.
Her passion was journalism, a job which requires travelling and typing quickly to tight deadlines, but such challenges didn’t deter Myra and meeting Tom and his family, she seized upon an opportunity to fulfil her dream.
Nikki has just got off the phone with Tom’s publicist in LA who had called having heard the news of Myra’s death. With bitter timing because she had just managed to include Myra on the next Marvel press junket in London. This would have thrilled Myra and she would have done a great job because she was a sensitive and intelligent interviewer and always elicited thoughtful answers. Myra didn’t want this role because she had EB and that people felt sorry for her but because she was an intelligent and able journalist.
Myra called Nikki regularly. She wanted to know if there was anything she could do to help The Brothers Trust. Or she’d call to explain that she had just interviewed such and such a ‘star’ and how much she had enjoyed doing so.
There are all sorts of terrible diseases that afflict people, but EB makes a powerful case for being the cruellest, the most painful and the most unrelenting. And because there is currently no cure for EB, this must hurt its sufferers even further and why it is worth reiterating Myra’s stoicism and bravery.
I like to use the phrase the woe bubble. It's what we all tend to lean on. ‘Woe is me’ or feeling sorry for ourselves. Nothing pricks a woe bubble quite like meeting someone like Myra. The last time I met her was at a reception at The House of Commons with football star, Graeme Souness and his brave co-hort of swimmers who had swam from England to France to raise awareness of EB and funds also. Standing for any length of time, my feet quickly tire, and I begin hopping from left to right and yet Myra stood throughout the entire reception on feet with open sores, ulcers and very likely without any toes. The reception concentrated on the possible cures for EB and the millions of dollars this would require. During his fund-raising endeavours, I recalled the late James Dunn frequently saying ‘it’s too late for me, but other kids born with EB won’t have to live and suffer like I have done.’
Myra knew this also. The last time she called Nikki, was with the news that her skin cancer had become terminal and with this, she wanted to discuss an initiative to help EB sufferers to create fond memories during their shortened lives. Both for themselves but also for the families caring for them, who are equally afflicted by this disease.
This awareness demonstrates Myra perfectly, that she was thinking of others and how to help fellow sufferers she was leaving behind.
None of us count our blessings often enough. The good fortune that has visited Tom has enabled us to establish The Brothers Trust which is so kindly supported by his fans throughout the world. As well as raising money, we are keen to raise awareness of little-known charities and conditions. Our work with EB and being able to facilitate Myra Ali in her quest to become a journalist has been so rewarding for us all.
I end by repeating the words I opened with…
Meeting and getting to know Myra Ali has been a privilege for everyone involved with The Brothers Trust. Myra Ali’s life focusses our efforts to do as much as we can for people much less fortunate than ourselves and we thank all of our supporters for making this possible.