By Claudia Simms Abram.
Ten years ago, my sister and I both had our first children. Born twelve hours apart in the same hospital, my twins and her daughter took their first glimpses of the world from the beds next to each other, and family and friends came to visit us all and celebrate their arrival.
This incredible beginning, sharing beautiful days with our precious children started to unravel when my sister’s daughter, Lotta, stopped making eye contact, started dropping things from her hands and losing her barely-found balance, at around nine months old. She had started to regress. As this continued, our anxieties rose as the little girl who was just emerging was ever so slowly starting to fade.
Many hospital appointments later, we heard news that she had finally been diagnosed with what my sister described as ‘the worst possible diagnosis’ of Rett Syndrome. She was two and a half years old. Our worlds collapsed. Our paths diverted. Lotta lost her ability to eat, speak, use her hands, walk, communicate in any way. She was lost and so were we all.
Needless to say, our different and parallel journeys highlighted all too starkly the different path that parents and children with disabilities take. It put enormous pressure on family relationships at an already pressured time (my father suffered two strokes during this time and died shortly after Lotta’s diagnosis). It reinforced to me how lucky I was to have healthy children, and what a responsibility we have to create a better world for all.
Lotta is a truly inspiring character. She amazes me with her bravery and, for the most part, good humour and nature in the face of considerable daily adversity and pain.
Lotta is now ten. It is a landmark year in which the first human clinical trial of Rett gene therapy will happen. This will replace the missing MECP2 gene and is a potential cure. This work has been mainly funded by the efforts of families connected to Rett Syndrome. It is a scientific breakthrough and huge achievement.
The very first UK Clinical Trial for Rett Syndrome, using a drug to help with breathing irregularities, is taking place now right here in London. Another UK trial for a potential treatment for symptoms of Rett is due to be announced soon.
I could barely talk about all of this for a long time, but now I realise it has been a driving force to put my energy to good use.
I work for sustainable luxury clothing brand DEPLOY. Through our commitment to ethical fashion, we offer hope of a better, more responsible, caring future and healthier and balanced planet for all.
We are holding an event on Wednesday June 12th the St Pancras Renaissance Hotel. Tickets are now on sale so please join us for our fun and inspiring “Business NOT as usual’ evening.
Tickets are £50 and include panel and catwalk show, drinks & bowl food.
All proceeds will go to Reverse Rett.
You can also raise a further 10% for Rett research by using the Code Reverse Rett when you shop online at www.deployworkshop.com (Valid now until 12th June).
Bernice Pan, Founder and Creative Director of DEPLOY, said ‘At DEPLOY, we treasure women from all walks of life, and are proud to celebrate and dignify each woman through the care we take in designing, making and fitting beautiful, sustainable and ethical fashion. We are honoured to be supporting Reverse Rett, a charity dedicated to changing the everyday reality and the future possibility of girls with Rett Syndrome.’