AIDAN HAS A POSSE!

AIDAN’S LAW is Official.
New York State will be the first state to test all newborns for ALD starting no later than January 1, 2014
Aidan I know you were with me every step of the way and because of you so many lives will be saved. The signs you’ve sent me along the way and of course today is Good Friday and also exactly 11 months since you’ve left us.
I promised you when I started this fight that it would be done before your 1 year annivesary, the only gift I could possibly give to honor your life. I knew you were a miracle from the second I looked at your beautiful little face and you are an angel for so many boys that will be born after you with this dreaded disease.
There are no words to describe the pain I feel everyday without you, I just know you are here with me in spirit and that I will be with you again.
For the time I have here, I will continue to help all the boys and families with ALD and try to make a difference in their lives.
Love to all of you that have honored Aidan and all the boys and families struggling with this disease. Every petition, every phone call, every message, everytime you shared the story got us to today. It would have never happened without all of this support.
Xoxoxo

Hunter’s Hope helps us contact legislators for Aidan’s Law

Picture 1     Senator Golden, Bobby & Elisa Seeger, Senator Lanza and Assemblywoman Malliotakis  We are happy for our victory in passing this from the Senate Health Committee to the Finance Committee. As you can see Bobby’s joy!!

Picture 2     Senator Hannon Chair of the Health Committe, glad we had some time to sepnd with him and discuss ALD and the importance of Newborn Screening. Big Thank you to Senator Hannon for placing this on the Health Committee Agenda and supporting our cause!!

Picture 3    Senator Marty Golden who has been with us from the beginning helping us with sponsoring Aidan’s Bill and making it get to the next level.

Big Thanks to Senator Adams, who I didn’t get a chance to get a picture with, who spoke at the hearing and was the first sponsor on the Aidan’s Bill as well as one of the first people to reach out to me when Aidan was first diagnosed. You are Amazing!!

Kelley Family & Lee & Steve working towards legislation in Connecticut

Aidan’s Bill S2386 will go before the Senate Health Committee this Thursday February 28, 2013 at 12:00 in Albany. Thank you to Senator Hannon, Chair of the Health
Committee for making this a priority and to all the members of the Health Committee for listening to our story. Senator Adams and Senator Golden will be addressing the committee as they are the sponsors of the bill. If you would like to view this live, please go to:

http://www.nysenate.gov/event/2013/feb/28/health-meeting

We made our way up to Albany this past Monday February 4th and had over 40 meetings scheduled with the ALL Health Committee members.

Thank you to Aidan’s Grandpa Bob for helping me split the meetings in half and getting into all of those offices to speak to and drop off our file folders of information.

We had a great day and even though it was more than emotionally and physically draining to repeat Aidan’s story as many times as I did, we have brought Aidan’s Law a little closer to being accomplished.  We’ve had more members sign on to the Bill and more who have promised to sponsor and push it forward.  I am thankful to all the Senators, Assemblymembers and staff who took the time to listen and pass this information on.

Not sure why this has been such a struggle. We have all the information we need to make a difference, why are they waiting??

Who will tell those parents whose son has been diagnosed with ALD a few years from now, there was a test available??

We keep fighting to make this happen & it will…..

• $375,000 estimated annual cost to add ALD test to NYS  Newborn Screening Panel

($1.50/child x 250,000 births per year)

• The ALD newborn screening test is proven to be accurate with a false positive expected to be <.1%

• New York State has the needed equipment to run this test

• Current statistics state 1/17,000 children will be diagnosed with ALD, according to preliminary results from the Mayo Clinic this number may be much higher and closer to 1/10,000

• An estimated 25 children will be born every year in New York State with ALD

• Without the crucial early diagnosis these children will die from ALD or Adrenal Insufficiency

• 90% of boys with ALD will also have Adrenal Insufficiency, which is something that can present itself in the first few months of life and can be easily controlled with a pill that costs pennies a day. Non treatment of adrenal insufficiency can result in death.

• Once diagnosed with ALD these boys will be monitored with an MRI every 6 months, if any changes are detected treatment will consist of a bone marrow transplant

• Studies have concluded transplant prior to being symptomatic is the key to having a successful outcome, stopping the disease and these boys having a normal life

• Cost effectiveness of treating pre-symptomatic boys as opposed to symptomatic boys is astounding. Pre-symptomatic boys going through transplant can be released from the hospital within 3 months with follow up visits, as opposed to symptomatic boys which almost always have significant disease progression and will need constant medical and nursing care

This holiday season we decided to help a family with ALD. These are our friends ( and Posse members!)    Lee and her beautiful son Steve.  Steve has Adrenoleukodystophy. He was diagnosed at 7 and was not eligible for a transplant because his symptoms were too far progressed. Steve was given 3 to 6 months to live. Three months after his diagnosis Steve could no longer walk, talk or see. He is now 13, but because of his condition he needs round the clock care. Steve’s father died soon after his diagnoses. He passed away of a heart attack. Lee is alone taking care of Steve, she gets very little help from Social Security. Steve’s father did not have life insurance and Lee is unable to work and cares for Steve 24/7. Unfortunately, some necessary items are not covered by Medicaid and my hope is to raise enough money to get a new wheelchair for Steve and some other items desperately needed such as a pulse ox machine and a suction machine.  A new custom wheelchair is about $8,000 and Steve is not eligible for a new chair for 4 more years. Although only 13, Steve has grown and doesn’t fit into the wheelchair he currently has.

I asked Lee for permission to share her story! In hopes that we can raise funds for Steve and help him get a new chair.

Below are a few pictures of Steve

Steve at 5 years old

This is Steve 3 months after diagnosed with Adrenoleukodystophy. Steve could not walk nor talk, soon after he lost his sight and went blind.

Steve at 8 years old.

Lee and Steve May 2012

I pray that their story touches your heart and that you’ll be kind enough to help.

God Bless You!

Please help us make a difference for Steve and Lee, please click on the PAYPAL button to the top right of this page and feel free to add a message in this section to go along with your donation.