Tour for the Twins
|Start Date:||Jul 27th, 2013|
|End Date:||Jul 27th, 2013|
|Address:||427 South Stark Hwy|
Weare, NH 03281
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|Description||3rd Annual Tour for the Twins Motorcycle Rally for Jack and Hunter!|
9 am Registration at thye Dunkin Donuts Parking Lot in Weare, NH
Ride begins at 10 am
2:30 pm after-party begins at 99 Black Brook Rd in Goffstown,NH
Food, beer, drinks, hotdog eating contest, raffles, pool (to cool off in!)
$30 per rider (includes ticket to the after-party)
$20 per ticket to the after-party only
Who are Jack and Hunter?
Jack and Hunter MacKay were born February 20th, 2008, with a rare disease known as MPS IV, also known as Mucopolysacchride Syndrome or Morquio Syndrome. Morquio Syndrome only strikes about 1 in 200,000 live births and symptoms vary from person to person, with mortality rates also differing depending on organ development. The MacKay twins’ symptoms seem to range on the moderate to more severe end.
When Jack and Hunter were born, their parents, Alison and Matt, were unaware that there was anything wrong. They seemed to be developing normally until they were approaching their first birthday, when their parents noticed that they were developing a hunch in their back and their ribs were flaring at the ends. By two years old they still weren’t walking, suffered from hip dysplasia, and their growth had slowed down tremendously.
It wasn’t until Jack and Hunter’s parents decided to change their orthopedic doctor that they started to get answers. Their new doctor referred them to a neurologist where eventually a urine sample tested positive for Morquio syndrome. From there on out, life got very difficult.
What was supposed to be only 3-4 days of testing turned into 2 weeks of testing, exams, and surgeries. Since 2010, Jack and Hunter have both undergone a spinal decompression and two spinal fusions, and they have each had ear tubes put in twice. They are both currently looking at bilateral hip replacements and Hunter may possibly need ankle surgery. It is unknown how many more surgeries they will have to undergo in their lifetime.
Even with insurance, the medical bills are more than the MacKays can handle alone. Surgeries, hospital stays, medical equipment and therapies consume their budget and time. While IV treatment may hopefully become an option in the future once it has been FDA approved, most insurance companies still either won’t cover the cost or will only partially cover it. The estimated cost of IV treatment for them will be 500K per year.
Donate to Jack and Hunter
If you would like to donate to Jack and Hunter, check donations can be mailed to Alison MacKay 611 River Rd Weare, NH 03281. Please make checks payable to: Alison Mackay with Jack and Hunter in the memo.
If you would like to donate by credit card, go to www.jackandhunter.wordpress.com and click on “DONATE TO JACK AND HUNTER”.
Donating to Jack and Hunter themselves is NOT tax deductible by the IRS 501(c)3 non-profit
Donate to Morquio Syndrome Research and Development
Donating to the Jack and Hunter MacKay Fund Corporation is tax deductible under section 501(c)3 of the Internal Revenue Code. Proceeds from this fund will go directly to research and development.
To donate to the Jack and Hunter MacKay Fund Corporation (TIN# 27-3671928) for Morquio Research you can mail checks to Sherry-Ann Michael 73 Pine Glen Rd Hillsboro, NH 03244 (Make checks payable to: Jack and Hunter MacKay Fund Corp)
If you would like to donate by credit card, go to www.jackandhunter.wordpress.com and click on “DONATE TO THE JACK AND HUNTER MACKAY FUND NON PROFIT”
What is MPS IV?
The following definition is from the National Organization of Rare Diseases www.rarediseases.org
“Morquio Syndrome (mucopolysacchridosis type IV; MPS IV) is a mucopolysacchride storage disease that exist in two forms (Morquio A and B) and occurs because of a deficiency of the enzymes n-acetyl-galactosamine-6-sulfatase and beta-galactosidase, respectively. A deficiency of either enzyme leads to a build of mucopolysaccharides in the body, abnormal skeletal development, and additional symptoms. In most cases, people with Morquio Syndrome have normal intelligence. The clinical features of MPS IV-B are usually fewer and milder than associated with MPS IV-A. Symptoms may include growth retardation, a prominent lower face, an abnormally short neck, knees that are abnormally close together (knock knees), flat feet, abnormal sideways and front to back or side to side curvature of the spine, abnormal development of the growing ends of the long bones, and/or a prominent breast bone. Hearing loss, weakness of legs, and/or additional abnormalities may occur.”
Follow Alison’s blog and find out more at jackandhunter.wordpress.com
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