Captain Sir Tom Moore has raised nearly £33m for NHS Charities Together and the funds are going to the frontline workers who are giving so much during the COVID-19 pandemic. He initially set himself the goal of £1m, nevertheless people responded beyond expectations and their generosity helped him achieve a much higher feat.
Awareness, endearment, relatability, and selflessness have helped his efforts: a World War II veteran walking 100 laps of his garden before reaching the venerable age of 100, helping his nation one more time at a time when one of its most revered institutions is under siege and those who can support it can do so from behind closed doors.
For the past five months, my heart and mind have been captured by the story of Robert Grabazei, a seven-month old baby born in October 2019 with Spinal Muscular Atrophy (SMA) Type 1, a genetic disease caused by the inadequate production of motor neurons, which will take his life before he reaches two and has the chance to genuinely put a foot in front of the other. His life can be improved and saved with Zolgensma, an innovative gene therapy treatment which is at the moment the only chance for babies born with this disease. A one-shot treatment, Zolgensma costs £1.7m.
I have watched the funds raised for him like a hawk ever since his diagnosis last December and I have been impressed with people’s response. Several weeks ago, Robert’s family raised just over 70% of the funds they need to afford the treatment. I hope the outstanding amount (£0.5m) is arrived at as soon as possible: babies diagnosed with SMA 1 lose the motor neurons they were born with every. single. day.
Similar to Captain Tom Moore, I believe endearment has played a significant part in people talking about and donating for Robert. I wonder if higher awareness of SMA 1 and its devastating effects would have helped this fundraising effort go further, faster. His parents will undoubtedly succeed in raising the funds they need to save his life, however a longer-term solution is needed for every 1 out of 6,000 – 10,000 babies born globally with SMA 1 who come into this world with a significant price tag on their life and who need these funds within their first six months in order to stand a chance.
At this point, I only wish Captain Sir Tom Moore could come out of retirement, walk a symbolic lap of his garden and help raise the final leg of the amount Robert needs to take his first steps. I feel like this little guy could use a hero and who better at this moment than a man who has seen, done and achieved so much.
About SMA 1: Spinal muscular atrophy (SMA) is a group of genetic diseases that cause weakness and wasting in the voluntary muscles of infants and children and, more rarely, in adults. It’s one of the most common genetic conditions affecting children (est. one in every 6,000 to 10,000 babies worldwide is born with SMA).
In more than 95% of cases, SMA is caused by inadequate production of a protein called survival motor neuron (SMN) protein that is essential to motor neurons.
There are four different types of SMA. The classification is determined by the developmental milestones the child has hit by the time of the disease onset. Type 1 (severe) SMA is the most severe and the most common. It is usually evident at birth, or in the first few months afterwards (0-6 months). Symptoms include floppy limbs and weak trunk movement. Children with this type usually have very limited ability to move, a hard time feeding and swallowing, holding their head up, and breathing. Type 1 SMA progresses rapidly, with the weakening of muscles leading to frequent respiratory infections and usually death by the age of 2. Infants with SMA type 1 can never sit. (ref. Cleveland Clinic.org).
Irina Writes 