Fundraiser and Silent Auction

~September 12, 2010~ 2pm-5pm
~Silent Auction 2pm-4pm
~Alpine Club 175 Putnam St. Manchester, NH
~RSVP by 8/28

Meet Jack and Hunter
Jack and Hunter were born 2/20/2008, 4 weeks early. Not uncommon for twins. Jack was 6 lbs 3 oz and Hunter was 5lbs 15 oz. The boys were able to go home 2 weeks later. It wasn’t until they were 6 months old when we started noticing their irregularities. They had a hump in their middle back and their ribs flared out at the ends. At 2 years old they still were not walking, had kyphosis (the hump in their back), hip dysplasia, flared ribs, and their growing had slowed. In June 2010, our orthopedic doctor referred the boys to a neurologist who had urine samples performed. The samples returned positive for MPS IV or Morquio Syndrome. They were admitted to Dartmouth Hitchcock Medical Center for consultations and MRIs. What was supposed to be a couple of days in the hospital turned into a two week stay. Their spinal cords were being compressed by their first vertebra and surgery was necessary to release the pressure. Spinal fusions were also completed.

What is MPS IV?
MPS IV or Morquio Syndrome is part of a group of syndromes called mucopolisacaridosis or MPS. Individuals with MPS IV are missing one of two specific enzymes which are essential in the breakdown the body’s natural sugars. These sugars build up in the body and with MPS IV they build up in the bone joints. The syndrome is very rare happening in only 1 in 300,000 live births. Parents pass it to their children only if they both carry the recessive mutated gene. There is a wide range of symptoms that Jack and Hunter will develop in life. Because of the sugar build up in their joints they will have joint problems like hip dysplasia and hyper flexible joints. Children usually slow down growing at age 18 months and with severe cases will stop growing at age 8. Less severe cases will stop growing in their teens. They can develop organ problems including liver, spleen, heart and lungs. Some children need upwards of 20 surgeries in their life time. The intelligence of these children develops normally. People with MPS IV can usually lead somewhat normal lives and with less severe cases can live into their 50s and 60s. The severe cases lead to heart and lung problems which can cause the individual to expire in their 20s and 30s. At this time we do not know how severely the boys have this syndrome.

Where is your money going?
This fundraiser helps pay for extra medical attention the boys will need to receive though out their lives. We do not know how many surgeries the boys may require or if they will ever walk unassisted. Whether the need is for surgeries, hospital stays, medical equipment, or therapies, we know, even with insurance the costs will be beyond our means.

~Event includes luncheon with refreshments, cash bar, and casual music~
~Your tickets & prayer ribbons will be mailed to you when your response is received~

Please check all that will apply and return the bottom portion with your check. Thank you!!

Ο We will keep Jack & Hunter in prayer Ο Monthly gift of $___ & receive
the newsletter
Ο Make a monetary donation
Ο Purchase tickets ___ (Number of tickets, $20 each)
(age 12 and under do not require a ticket)

Ο Donate a silent auction item
Ο Sponsor a table ($160, 8 tickets)

Please make all checks out to Alison MacKay (Jack &Hunter in Memo)
Please mail to 611 River Rd Weare, NH 03281

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About Alison

Mother of twin boys whom both have morquio syndrome
This entry was posted in Jack and Hunter. Bookmark the permalink.

One Response to Fundraiser and Silent Auction

  1. Greg Kwasnik says:

    Hello,

    My name is Greg Kwasnik and I am a reporter with the New Hampshire Union Leader. We’re interested in doing a story about Jack and Hunter and your fundraising efforts. If you would be interested in this, you can reach me by email (gkwasnik@gmail.com) or phone at (603-953-3303). I look forward to hearing from you.

    -Greg Kwasnik

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