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 extraordinary daily pain that blighted her entire life. Never once did we hear Myra complain about her illness and the wretched hand that had been dealt to her and her younger brother.
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 so the only way to conflict and to ever conquer her EB was by distraction. To find things that she was passionate about and take her mind off the relentless pain she endured.
Her passion was journalism, a job which requires travelling and typing quickly to tight deadlines, but such challenges didn’t deter Myra at all and meeting Tom and our 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 her 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 people felt sorry for her but because she was talented and worthy of the role and this she proved time and time again.
Myra called Nikki regularly. She wanted to know if there was anything she could do to help with The Brothers Trust. Or she would call to explain that she has 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 that Myra never moaned.
I like to use the phrase 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 even though her feet would have had open sores, ulcers and very likely she had already had her toes removed. The reception concentrated on the possible cures for EB and the millions of dollars required. During his fund-raising endeavours, I recall the late James Dunn frequently saying ‘that it’s too late for me, but other kids born with EB will be saved and won’t have to live like me’…
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 the disease.
This demonstrates Myra perfectly, that she was thinking of others and how to help fellow sufferers ease their pain.
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 less fortunate than ourselves and we thank our supporters for making this possible.
