Some of you might know us already from the fundraiser we held last year. We would like to thank each and every one of you for your help and support. Your donations made a world of difference to us. Thanks to you, Andreas-Rares is now able to do so much more. He’s been given a fighting chance.
For those of you who don’t know us yet but would like to, here is our story.
Our son, Andreas-Rares, was diagnosed with an extremely rare syndrome called Allan-Herndon-Dudley when he was 12 months old. There are about 200 diagnosed cases all over the world and there is no treatment for it.
He is part of a medical trial for a medication believed to alleviate AHDS associated symptoms. The trial takes place in Bucharest and for that we need to travel quite often. We have helping friends in Bucharest so we don’t have to pay for accommodation but traveling is quite expensive. We also need to pay for the transport of the trial test blood samples to Erasmus Hospital in Rotterdam, the Netherlands.
We increased Andreas-Rares number of therapies this year. He is now having cognitive development and ergo therapy in addition to the two kinds of physiotherapy he was having last year. They all add up to 10 therapy sessions per week and they are quite expensive, amounting to 1200 Eur per month out of which only one third is supported by the welfare system.
We have diversified his food supplements and we are continuously searching for anything able to give him that extra boost of energy and focus. He is currently taking a special formula that has been created and developed for his particular needs by a lab in Canada. This supplement alone costs 100 Eur per month.
Our house is our gym. Whenever he is not having a therapy session he is putting in extra work exercising. He is using every day the horse simulator which worked miracles for his back and neck muscles. Playing is never just playing, it always involves an exercise of some kind.
He grew so much this year! He even gained one whole kilogram which is surprising considering his condition. This is why we will need to change or buy new equipment. The walker he has is already small for him but freedom to explore helps him develop so we can’t give it up until we manage to get a new one. We’ll need to buy a sitting chair for the flight and a travel special needs stroller since we need to travel so often. He is growing out of his car seat and of his bed and we will need to replace them soon.
We came a long way from last year. We are less scared, more grounded and we understand that this is a long term battle. There is no quick fix; there is only hard work and hope. Sometimes we have the feeling that last year was in a different lifetime. We learned a lot, we struggled but we survived. Our lives were shattered but now, we’re slowly beginning to put the remaining pieces together and build our new life. It is quite different from what we have imagined but it is our own once more and we are embracing it with faith and hope.
You’ve been by our side before; now we need your help and support once more. We ask of you to give Andreas-Rares the chance to beat the odds, to be the best he can become.
Please donate! Every little bit of money helps.
Thank you very much!
We also created these bank accounts for donation purposes only:
Name: Veronica Popa
EUR - RO63BTRLEURCRT0363764501
RON – RO16BTRLRONCRT0363764501