FUNDRAISING SHOWCASE: RACE AGAINST TIME…
Posted by Devenia Besant on 09 Aug 2023
Hi Kida, Tell us more about you and your family?
I live in Ewell with my husband, I’m a mummy of 3 and I run a beauty business from my home studio. Our busy household consists of Arvin my eldest who is affected by a rare gene (DHDDS), I have a daughter who is 4 yrs old and a baby 9 months old, and our Pomski too!
Can you tell us more about the DHDDS gene that Arvin has?
It’s an ultra-rare, degenerative, genetic condition. There are only 70 people diagnosed with the condition worldwide. There is currently no cure for this rare disease, but we have a lot of hope. Top laboratories in the US and Europe are optimistic they can find a treatment and we have to keep believing this.
You are now fundraising with the fundraiser being called “Race Against Time” when did you first notice Arvin’s symptoms?
Arvin displayed symptoms since he was a baby, always restless and never stopped crying for the first 7 months of his life. He was always so challenging to get him to interact with play or people, he wasn’t interested in other kids, and didn’t like exploring anything. I went through a change of childcare settings every few months as they said they couldn’t meet Arvin’s needs. Until we got a diagnosis of ASD at the age of 3 we struggled with childcare, then getting a diagnosis was such a relief because we knew he needed a specialist school placement which he got.
Could you tell us more about Arvin’s daily struggles?
Arvin is still non verbal, in nappies and needs help with all self care needs. He has epilepsy and needs watching 24-7. He struggles with going up and down the stairs and isn’t able to use most climbing frames at playgrounds. Not being able to communicate his needs or pains when he is poorly is the hardest thing for Arvin and us as it causes many tantrums throughout the day. He hates going out in public which we avoid as much as we can.
What would having this treatment mean to Arvin going forward? What difference will it make to his symptoms?
The rare genetic condition Arvin has, is progressive which we know from a study that other patients affected have lost their mobility, their intellectual ability and get tremors as early as teens. To know that Arvin could get worse without being given a chance to get better is heartbreaking. Scientists believe that through drug repurposing treatments they could stop this condition to deteriorate, it will help with the Epilepsy and some of their daily challenges to improve. This is really promising as we would still continue to provide all the therapy that he needs to be able to live a happy life, and a repurposing treatment will just stop the gene acting in its normal degenerative way.
Lastly how can the community support your fundraising? Tell us more about the charity?
Raise awareness and donate as little as anyone can. The charity was set up by an extraordinary local mom, who’s 2 children are affected by the gene, and who has achieved so much in the last 6 months, from creating a FB group with other parents worldwide, to bringing all the professionals on board and with an interest in finding treatment.
We are now only 3 families (all in London) in the whole UK who need your support in raising the funds. Without funding the scientists will not help, and we do not have years to wait for hospitals funding to become available, as every day that goes by is a day closer to my son being in a wheelchair or not holding a cup due to the tremors getting stronger.
Thank you for sharing Kida and I wish you every success with your fundraising!