Lueur d’Espoir Pour Ayden
- 9 sep 2016
- 5 minuten om te lezen
Dear all,
My name is Ayden and I am 2 years old. I suffer from a leukodystrophy of type Krabbe, a degenerative disease destructive and incurable which affects the nervous system. My life expectancy is around 2-3 years old if we do not do anything.
This is an orphan disease. For example, in France where I come from there are only two cases, me included…
I am fighting against this disease since I am 8 months old. Before, I was a normal little baby moving and babbling. Then I lost slowly my motor skills, ability to swallow and even to be fed, except by drain.
The genetic researches on this disease are rare because of the low number of cases and the absence of financial interests. What has been done until now focus on genetics treatment and there has been some results for infants who got a steam cell transplant. Unfortunately, this is not an option if you are diagnosed with that disease after few months of life like me because the symptoms of the disease have already had an impact on your body and mind.
When I was diagnosed, the doctors then said my parents that I would die age of 2 or 3 years old and that there was absolutely nothing to do. I will degenerate and will receive neurological treatment to calm the pain (nervous spasms) until my death. I have started the treatment and started to degenerate…But my parents could not let this go this way and decided to fight.
They found this family from Quebec whose son life (suffering from Krabbe disease) has been increased with an alternative treatment they have imagined themselves and which is simple: change of diet (since the affection of the nervous system is the result of the accumulation of lipids toxin which children with Krabbe disease are unable to eliminate, intensive re-education classes with alternatives methods, sessions in hyperbaric caisson of oxygen to regenerate the cells…)
With this, the little boy from Quebec recovered some motor skills which was absolutely impossible as said by doctors from all over the world. They said it was an exception and a miracle. But the results were such impressive that the University of Quebec decided recently to start some scientific researches. A research team is now working on it. All this thanks to the fund raised by the Quebec and French families: only private funds, no help from governments.
The first results of this research are quite promising and are moving quite forward. This is even more promising that I have followed it since June and it already shows unexpected results too.
Unfortunately, the little boy from Quebec died this summer age 4 because of respiratory issues, as it is often the case with that disease. But his life was quite improved and at the end of his life, he was able to seat, to be mouth fed, to interact with people surrounding. Unfortunately, this is absolutely not the case at all for children with that disease who receives neurological treatment waiting for a sure death and are completely absent, laying on a bed and suffocates because unable to swallow.
I have now just spent 3 months in Quebec with my parents and my little brother to follow this therapy and I ma proud of my improvements in this short period of time: I have now came back to mouth feeding (while I was fed by a drain since more than a year), I keep the seat position, I am able to hold a pen or a book in my hand (while I was a rag doll, I am babbling again, and today I have been even able to hold my head straight up while seating on my high chair!
I have also stopped ALL the neurological treatments since one month (neurological treatment stops the normal development of children but are given to relieve the pain due to nervous spasms), and I do not have any spams and sleep very well. My parents are following everyday the new therapy (they have been trained to give the re-education themselves while in Quebec) and hope that the researches from the University of Quebec (which will last 3 years) will give more results soon.
The idea would be to stabilize the progression of the disease so that I may also benefit from a steam cell transplant. Of course, the idea with this therapy is also to improve my quality of life. Of course, the idea is that the researches will benefit to all children suffering with that disease, not just to me. But now, I am trying it with the hope that it is for the best and will be used in the future for all children like me.
The financial needs are not huge. At the time of today, they need 300 000 euros to be sure that the researches will be done until the end. If it works, this will benefit to all children like me who suffers from Krabbe disease all around the world.
Since there are no government funding investing in this field and they are not enough parents of sick children to be able to can afford by themselves to support financially the researches, my parents are asking for your generosity and for a financial gift.
The money would serve for the researches bur also a bit to help us to buy what we need to continue the re-education since we have now came back home to France (on 2 September).
Here is the link to donate (on helloasso). You can also donate 1€/month through Grupo Teaming (see on my facebook page; we have already more than 400 followers on Grupo Teaming). This is a Spanish platform. One click to donate and one click if you decide to stop the monthly donation. It is easy and reliable. All the money is entirely distributed to the association (Sabadell Bank committed not to take any commission).
You can also see my story on French TV show which was done before we went to Quebec.
Now, you will see my improvements on my Facebook page.
Of course you can follow my page on Facebook to see what is going on on a daily basis; my parents are fighters and are very active and so am I.
We have more than 60 000 followers on Facebook!
Many thanks in advance for your generosity. If you do not donate, I would be very grateful if you can share my story on your social network.
Merci à tous J
Link for donate on helloasso
Facebook page
Ayden’s story on French TV show
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