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July 16. 2012 6:46PM
Bikes will be lining up Saturday to support twins with rare disease
WEARE — A midsummer motorcycle ride through the winding roads of southern New Hampshire can help raise money to support two little boys who are battling a rare genetic disease.
At 9 a.m. Saturday, the second annual Tour for the Twins will start at Dunkin’ Donuts in Weare.
The Tour for the Twins began last year as a fundraiser for the family of Hunter and Jack MacKay, twins who were born in 2008 with a rare genetic disorder called MPS IV or Morquio Syndrome, according to their aunt Heather MacKay.
Because of Morquio Syndrome, the children’s bodies do not produce the right enzymes to break down material in the cells throughout their bodies. The impact of the disease means the boys’ bones don’t grow as they should. At just 4 years old, they have each undergone two spinal fusions along with countless other operations, procedures, and obstacles, said MacKay.
And there are more to come. But this year, the boys have gotten a bit of a break from the doctors.
“The boys are doing quite well and taking this year off from major surgery,” said MacKay. “Coming up next for the boys will be hip reconstruction for both of them. They are truly enjoying the summer time.”
Though both were slow to walk because of their soft bones, MacKay said some of the money raised last year went to the purchase of special walkers that give the boys some much-needed mobility.
Last year, MacKay organized the first annual Tour for the Twins event, drawing 50 bikers from around the region and raising $3,000 for the family to help defray the cost of caring for the boys. Because the disease means constant medical attention for the kids, their parents, Matt and Alison MacKay, have been forced to live on one income, and the cost of transportation alone to the many doctors’ appointments can be overwhelming.
With this year’s Tour for the Twins, MacKay hopes to draw a large crowd for the ride which includes a poker run and an after party with food. Registration for the event is $30 per bike/$10 passenger (includes ticket to after-party) or $10 per ticket for the party only. For more information call Heather MacKay at 938-2594 or email: jandhmackay@yahoo.com.
nfoster@newstote.com
At 9 a.m. Saturday, the second annual Tour for the Twins will start at Dunkin’ Donuts in Weare.
The Tour for the Twins began last year as a fundraiser for the family of Hunter and Jack MacKay, twins who were born in 2008 with a rare genetic disorder called MPS IV or Morquio Syndrome, according to their aunt Heather MacKay.
Because of Morquio Syndrome, the children’s bodies do not produce the right enzymes to break down material in the cells throughout their bodies. The impact of the disease means the boys’ bones don’t grow as they should. At just 4 years old, they have each undergone two spinal fusions along with countless other operations, procedures, and obstacles, said MacKay.
And there are more to come. But this year, the boys have gotten a bit of a break from the doctors.
“The boys are doing quite well and taking this year off from major surgery,” said MacKay. “Coming up next for the boys will be hip reconstruction for both of them. They are truly enjoying the summer time.”
Though both were slow to walk because of their soft bones, MacKay said some of the money raised last year went to the purchase of special walkers that give the boys some much-needed mobility.
Last year, MacKay organized the first annual Tour for the Twins event, drawing 50 bikers from around the region and raising $3,000 for the family to help defray the cost of caring for the boys. Because the disease means constant medical attention for the kids, their parents, Matt and Alison MacKay, have been forced to live on one income, and the cost of transportation alone to the many doctors’ appointments can be overwhelming.
With this year’s Tour for the Twins, MacKay hopes to draw a large crowd for the ride which includes a poker run and an after party with food. Registration for the event is $30 per bike/$10 passenger (includes ticket to after-party) or $10 per ticket for the party only. For more information call Heather MacKay at 938-2594 or email: jandhmackay@yahoo.com.
nfoster@newstote.com
