Sophia's fund
Donation protected
Sophia has been diagnosed with Spinal Muscular Atrophy Type 1 one week before her first birthday. Upon diagnosis we were told to take her home and love her until she passes away as there is no cure. The natural history of disease is bleak.
Clinically, SMA arises due to absence of a gene SMN responsible for production of protein that protects motor neurons (MN). As the MNs do not regenerate, any loss of MN is permanent and completely affects everything from movement, to breathing, to eating, to talking. As a parent you have to watch your beautiful child lose their abilities to move, eat and breathe. Soon this precious little being is locked up in his or her own body at the mercy of breathing and feeding equipment. The body becomes so weak that a simple cold can kill the child and most of the time it does.
Sophia is a strong Type 1 and she has been fighting off the advance of paralysis for longer than most. She requires a lot of physiotherapy, hydrotherapy, hippotherapy, correct sittings, cough assists, breathing assists, wheelchairs, standing frames etc. The equipment that costs money. Furthermore, there is now a chance for treatment! YES. In the USA FDA has approved first ever treatment for SMA for all types. In EU the process is longer, but all indications are that the treatment will be approved. As a result most of European Hospitals have opened Expanded Access Program. Due to number of issues within NHS, UK has been delaying access to this program for over half a year now. So we managed to get access to EAP in Paris on condition that we pay for everything ourselves, which we have so far.
We will always require income to support Sophia’s needs. In order to get the most out of the treatment we need intensive course of physio, hydro and hippotherapy. Then there will always be need for better wheelchair (at the costs of £25k) and upgrades of standing frame and seating as she grows. Any money received and more, shall be used to make Sophia’s life better in hope that one day she will become a useful member of society.
As a family, we stood together and pooled our resources to ensure that Sophia does notwant for anything and we will continue doing this. However, after our story has been published in Guardian, we have discovered that we may not have to do this alone. There are many awesome people who are willing to help us out at the time of need. The message of support coming from them and on-going requests clearly shows that people want to contribute towards Sophia’s needs. Therefore we decided to set up GoFundMe page for those who are willing to contribute to our cause directly. Furthermore, if you feel uncomfortable with supporting just Sophia, you can always donate money to SMA Trust and SMA Support UK or MDUK. These are the charities which support SMA.
We are truly grateful for the message of support and any donations given.
Victoria and Gennadiy
Clinically, SMA arises due to absence of a gene SMN responsible for production of protein that protects motor neurons (MN). As the MNs do not regenerate, any loss of MN is permanent and completely affects everything from movement, to breathing, to eating, to talking. As a parent you have to watch your beautiful child lose their abilities to move, eat and breathe. Soon this precious little being is locked up in his or her own body at the mercy of breathing and feeding equipment. The body becomes so weak that a simple cold can kill the child and most of the time it does.
Sophia is a strong Type 1 and she has been fighting off the advance of paralysis for longer than most. She requires a lot of physiotherapy, hydrotherapy, hippotherapy, correct sittings, cough assists, breathing assists, wheelchairs, standing frames etc. The equipment that costs money. Furthermore, there is now a chance for treatment! YES. In the USA FDA has approved first ever treatment for SMA for all types. In EU the process is longer, but all indications are that the treatment will be approved. As a result most of European Hospitals have opened Expanded Access Program. Due to number of issues within NHS, UK has been delaying access to this program for over half a year now. So we managed to get access to EAP in Paris on condition that we pay for everything ourselves, which we have so far.
We will always require income to support Sophia’s needs. In order to get the most out of the treatment we need intensive course of physio, hydro and hippotherapy. Then there will always be need for better wheelchair (at the costs of £25k) and upgrades of standing frame and seating as she grows. Any money received and more, shall be used to make Sophia’s life better in hope that one day she will become a useful member of society.
As a family, we stood together and pooled our resources to ensure that Sophia does notwant for anything and we will continue doing this. However, after our story has been published in Guardian, we have discovered that we may not have to do this alone. There are many awesome people who are willing to help us out at the time of need. The message of support coming from them and on-going requests clearly shows that people want to contribute towards Sophia’s needs. Therefore we decided to set up GoFundMe page for those who are willing to contribute to our cause directly. Furthermore, if you feel uncomfortable with supporting just Sophia, you can always donate money to SMA Trust and SMA Support UK or MDUK. These are the charities which support SMA.
We are truly grateful for the message of support and any donations given.
Victoria and Gennadiy
Organizer
Gennadiy Ilyashenko
Organizer
