July 29, 2008 mcfadyena

I have a few exciting updates! First off, Trey’s dose of Elaprase was increased on July 21 from 2 to 3 vials.

I have a few exciting updates! First off, Trey’s dose of Elaprase was increased on July 21 from 2 to 3 vials. This is VERY exciting given what I learned from Dr. Valayannopoulos’ research at the Symposium (I briefly outline his conclusions in my June 30 blog). According to Elaprase guidelines, Trey was due for an increased dose once he went above 24kg (he is currently at about 24.5kg), but for various reasons, Trey’s doctor was reluctant to do so. However, the great thing about Dr. Stockler is, she respects and gives a voice to parents! I approached her at the Symposium with Dr. Valannopoulos’ research and a week later his dose was increased! We are thrilled.
We also recently received the most amazing donation of $25,000 to the MPS II Fund. I’d like to shout the donor’s name from the rooftop with thanks, but he would prefer to remain anonymous, so that is how he will remain ($25,000 is more than 1/2 a research grant!!).
In medical news, Trey had an audiology appointment today and everything went great. Going to appointments where he has to listen and concentrate and pay attention is always stressful, but he did so well today! He paid attention longer than he ever has before and his hearing is as good as it’s ever been! Today is a great day!
I learned yesterday that Andrew Lanese, an eleven year old boy who has a severe form of Hunter Syndrome and has been denied Elaprase by the Ontario government, will soon be starting ERT. Andrew’s parents have raised enough money to give Andrew 3 monthes of ERT. On the one hand I am so excited for them that they have found a way to give Andrew the chance to try Elaprase. On the other hand, I cannot believe that I live in a country where parents have to raise the funds to pay for a drug that has been approved by the country and that is accessible to other kids in the country. If we had had to pay for Trey’s treatments for the past year and a half, it would have cost over 1/2 a million dollars. What parents will do for their children. Wow. Way to go Lanese’s!!
There are a number of children in Ontario and the rest of Canada whose lives depend on starting Elaprase now and there is something you can do to help. You can send a letter to Ontario’s Minister of Health. With every letter that is sent in, with every story that is in the media, with every person who makes a phone call, the pressure will build until the government has to respond. If you are willing to make the time, go the the Canadian MPS Society website: http://www.mpssociety.ca, click on ‘Get Involved’ and click on ‘Advocacy.’ A letter is waiting there for you. All you have to do is send it. You sending a letter is a random act of kindness. And I think we need more random acts of kindness in our world. We parents may not ever know that you sent a letter and may not be able to thank you for it, but please know we appreciate everything you do to help us and our country towards an Orphan Drug Policy. You’re doing it for our kids. And that means more than anything to us. Plus, if feels good.


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