Life in a family of nine neurodiverse individuals: How we do it, why we do what we do, helping you do it too. "What lies behind us and what lies before us are small matters, compared to what lies within us." - Oliver Wendall Holmes
Tuesday, July 6, 2010
Because We Can.....Why Help Someone Else When So Much Is On Our Own Plate?
By way of introduction, I received this letter from the mother of Ashley Hyde. He has neuroblastoma, a type of cancer that the UK has no protocol for treating in childrenThe Ashley Hyde Appeal on Facebook. The US does, but he can't get here because of financial issues. They're trying a new type of treatment in Germany, but don't have enough money to complete the recommended treatment cycles, etcetera. Ashley needs help, and as much as I would hope someone would help my kids if they needed it, I would like to help Ashley.
Maybe a "Pennies For Ashley" campaign in your workplace, or 2 dollar casual Friday campaign, any contributions are welcome. And if you know any organizations that would be able to help Ashley, please submit their names to me, and I will get them to Claire, Ashley's mum.
Ashley was diagnosed in June 2008 and since then he has undergone surgery to remove a tumour, 13 rounds of chemotherapy, High dose chemotherapy, stem cell therapy and radiation, Ashley reached remission in May 09, this was the most amazing news he had won the fight.
Devastatingly just after 6 month of being clear of cancer on the 22nd december just before christmas and Ashley 7th birthday a routine scan showed the monster has come back and Ashley started the fight again.
At present in the uk there sadly is NO protical for a neuroblastoma relapse, so there is no guidance for doctors to what treatment is best to be given to try and fight this monster again.
Ashley started treatment staright away in the form of a trial chemotherapy on 27th december 09 of a mix that he has not had before in the HOPE this will have a desired effect BUT sadly it hasnt, Ashley diease has continued to spread dispite many rounds of various chemotherapy and radiotherapy, some how though Ashley has managed to bouce back after each round and each infection he has got inbetween treatment.
We had been told there were no more treatment options in the uk, both trials Ashley had been put forward to he didnt meet the strick criteria so could not have the possible life saving treatments. for the past few month Ashley has been on a treatment that was holding the disease but we know this will not last forever.
A GLIMMER OF HOPE -----
BUT wether it be by co-incedence or pure fate, By contact with a families whose child is recieveing treatment in Germany at present, very kindly mentioned Ashley and some how within Days of corosponding with the proffesor there and the hospital, Ashley has been accepted onto a trial treatment.
This has given us so much hope and it is the break through we have so been hoping for, it is no miracle cure and is still in the very early stages of trials, but IT is having promising results so we HAVE to go and HAVE to try, we just can not accept there are no option and to go home and "have time", Ashley is still fighting so we will continue to fight with him.
This treatment however is private and very costly at the sum of 21,000 per round, plus the cost of travel and the family living in another country for what could be months at a time.
At present we only have enougth money raised to fund 2 rounds out of the proposed 4, then if this is sucseful in clearing enough disease Ashley can go onto have immunotherapy - antibodies but agin we will have to fund this ourself.
PLEASE , PLEASE CAN YOU HELP ASHLEY in his fight, AT WHAT IS HIS LAST CHANCE TO BEAT THIS MONSTER.
all you need to do is follow these 3 easy steps
1. visithttp://www.bmycharity.com/V2/AshleyHydeAppeal or
2. Donate just £2.00 to Ashleys appeal with either a credit card or PayPal account.
3. Forward this message to as many of your most trusted and generous friends, who you know will help Ashley with a £2.00 donation.
Remember by giving up the price of one cup of coffee or a cake, you could help Ashley to live a long and enjoyable life, where he would be able to see his little sister Amber grow up and enjoy the things with her, that we all take for granted!
Please help the force be strong in Ashley xxx
Ashley is now being supported by families against neuroblastoma and 2simple trust.
if you can not make a donation maybe you can show your support in another way, inviting other to join Ashleys group or holding your own fundrasing event for Ashley.
I'm a mother of seven, ages 22 to 6. They all have special needs of one variety or another, hence my interest in parent advocacy.
Despite special needs, every child has their own needs, and all children have some things in common. You will find here rants, raves, excitement, tears... things all parents go through. You will also find acronyms that special needs parents know, as do the professionals that work with our children. My hope and my goal is to provide experience, strength, and hope, as well to learn from comments and receive your experience strength and hope.
I don't have all the answers, but between us, we can find them!