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Septmeber 20th, 2008:

'Night of Magic for Sammy'


A Night of Miagic For Sammy
By Josh Lashley
In so many ways, four year-old Samuel from Stanhope is enjoying the type of life that is often seen in a happy, well-adjusted child. He loves to swim, and who can blame him in the heat we've been experiencing locally all summer. Further he likes to go fishing with his father and watch television programs such as Thomas and Friends, Max and Ruby and Scooby-Doo.

But, Samuel has a disease that no child should ever have to suffer through. At the age of three, Samuel was diagnosed with Cystic Fibrosis, a genetic recessive disorder caused by mutations in the cystic fibrosis trans-membrane regulator (CFTR) gene. It is characterized by pancreatic insufficiency, intestinal disorders, and chronic lung disease.

On September 20th, a special 'Night for Sammy' will take place at 7 p.m. at Vasa Park in Budd Lake. Renowned magician Magic Mark, will provide entertainment. Beyond the show, attendees will be treated to dinner and there will also be a silent auction. Tickets are 25 dollars with the money going toward ever mounting medical expenses,  

"He is afflicted in all regions where Cystic Fibrosis strikes,'' his mother Dawn Roberts said. "He suffers from respiratory and pulmonary illness and must use inhalers throughout the day, especially in cold weather. He must do aquatic therapy five times a week outside the home, in addition to respiratory therapy done by me at home.

"He also has pancreatic insufficiency that affects intestinal function and will start pancreatic enzyme therapy this summer. He has trouble gaining weight and must take special vitamin and protein drinks daily."

Remarkably, Samuel is still a very upbeat young boy. Truly an inspiration to all of us who let the minor distractions in life become bothersome. Samuel reminds us that life is precious and when a young child is suffering it will make not only he or she feel better, but make us feel better about ourselves when we can be of aid.

"He is a very sweet and spirited boy and we pray for a cure every day,'' Dawn said. "Until then, we must make sure he has all the care we can manage.

"Samuel is a very loving. But, he can also be shy, articulate, funny and he loves to dance. He is also quite a good singer. He has a lively spirit and personality.''

Foods that we wouldn't think twice about ingesting can be extremely harmful to Samuel.
"Samuel has severe food allergies to eggs and peanuts (can be deadly for him) so his menu of what he eats is not that broad,'' Dawn said. "He likes cereals, French fries, macaroni & cheese and pasta.
"He is also allergic to chicken, and as for red meat, it is difficult for him to eat as he has a strong gag reflex, I'm told having respiratory issues will cause a problem with eating. We have him on protein and calcium drinks/supplements.''

According to his mother, the mutations that Samuel has are very rare, and there is on-going research with regard to finding an effective treatment plan for his particular mutations which are: F1052V, I1139V, & Delta F508.

The latter, Delta F508, he shares with Dawn who was recently diagnosed at age 43 through extensive family studies geared toward helping Samuel. In the past year Dawn has suffered pancreatic insufficiency, meaning that enzymes that aid in certain functions of the pancreas and intestines are not present and must be replaced. This works with roughly 50% of patients that are diagnosed in adulthood, and Dawn is only the 67th person in the United States where doctors have made the discovery through studies of the child, and lifelong maintenance for her disease must be maintained.

Samuel and his family are currently struggling, now it's up to the community at large to give them reason for optimism.

For more information on the fund raiser or to purchase tickets, call Mary Lalama at 973-252-9889.

September 4th, 2008:

The DDH Cycling Club has received our new jerseys for 2009. We are still looking for new members to join our club, and help make this club grow, and help out with the foundation as well.

Thank you again to all of our sponsors for 2009.
(more information here)

July 12 th, 2008:

July 11, 2007:

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