Two northern Blair boys to benefit from the Make A Wish Foundation

Two children from the area will soon be benefiting from wishes granted to them by the Make-A-Wish Foundation.
First, 11-year-old Tyler Jodrie of Bellwood, the son of DeAnne Nelson. Jordie suffers from Adrenoleukodystrophy, a neurological condition which is unrelated to muscular dystrophy.
“He had an MRI done on Christmas Eve 2003,” said his mother, DeAnne Nelson. “He was normal until about the age of eight, but then he started having a lot of behavior problems.”
Those problems were misdiagnosed as other illnesses until the MRI revealed Tyler had a type of leukodystrophy. Further results pinned the diagnosis down even further and revealed fatty substances were forming in his brain. He is missing an enzyme which should break down that type of fat.
Instead, the condition is affecting his behavior, his speech, walking and vision. Eventually, he will develop dementia. Nelson said it is a fast-moving disease and she’s been told her son has a prognosis of only one to two years before the “worst case scenario” would manifest itself.
“There is no proven cure,” said Nelson.
In regard to Tyler’s wish, he decided on a swimming pool after a couple of visits by Make-A-Wish volunteers.
“He was having a bad day when they came the first time,” said Nelson. “He had to say what he wanted (and did when volunteers visited a second time).”
Tyler’s swimming pool will be installed after arrangements are made with Holliday Pools in Duncansville.
“He loves the water,” Nelson told The Daily Herald. “It helps to relax his muscles.”
Tyler is currently experiencing some leg problems and is not very talkative at this point, according to Nelson.
“Make-A-Wish has been great,” she said. “I can’t believe how fast and smooth everything came about.”
Nelson said she did not know very much about the disease until her son was diagnosed with it. She did say there has been a movie made about it, titled “Lorenzo’s Oil.”
Another area youngster, 17 year-old Chad Smith of Tyrone, has also been granted his wish from the foundation. Chad is the son of Terri and Mark Smith and suffers from Epilepsy.
“They have been really nice to me,” said Chad about the Make-A-Wish Foundation.
He said he has suffered with Epilepsy since he was a toddler, although “things have been going pretty good lately.”
His dad, Mark, said he took Chad to Pittsburgh after the first of the year for a medical visit. A doctor then made a recommendation about the program and gave a referral to the foundation about the Smiths and their son.
Chad will be going to Hawaii next May with his family as his granted wish.
“We heard the news in the last couple of months and will be going next spring to accommodate everyone’s schedule,” Mr. Smith told The Daily Herald. “It’s a really nice program. They have it set up to make him feel like a king. They will cater to him to make him feel as special as possible.”
According to information posted on its web site, the Foundation considers children through a referral system. Anyone can make a referral, but the family needs to be aware of and agree to it.
The organization then contacts the child\’s doctor to confirm that the child has a life-threatening medical condition and meets the medical criteria for a wish. The doctor also helps the foundation decide if the child\’s wish is safe and appropriate for the child\’s medical condition.
Once it has received a signed medical authorization form from the doctor, a volunteer “wish team” is assigned. Teams are made up of two or three volunteers who have completed wish granting training.
The team then arranges a visit to the family. The Make-A-Wish Foundation sends the wish team toys, gifts and T-shirts to give to the wish child and their family.
During the visit to the family, the wish team\’s primary responsibility is to help the child identify their wish. Sometimes they use markers, crayons and paper to help the child draw their wish. Sometimes, as in Tyler’s case, it takes a couple of visits before the child picks a wish.
Once the wish is determined, the Foundation and its volunteers go into high gear. Putting together a wish might include any number of arrangements including working with airlines, limo services along with other purchases and the planning of parties.
The wish team stays in touch with the family as they plan the wish. With the help of donors, local retailers and vendors, the wish team dreams up surprises, seeks in-kind donations, organizes itineraries and sets dates.
The Foundation notes on its web site, “no detail is too small…but for the wish child, the details don\’t matter… they see only the magic.”
The most popular wish is a trip to Disney World which accounts for 40 percent of the wishes granted. Other wishes include the ones being granted to Tyler and Chad along with computers, shopping sprees, celebrity meetings as well as some unusual ones, too.
The organization relies on private donations from individuals, companies, foundations, schools and corporations. It does not receive government funds or grants.
Make-A-Wish of Western Pennsylvania and Southern West Virginia is also not a United Way-member agency; however, it does participate in what is know as a contributor’s choice program in many counties.
For more information on contributing through the United Way or for details on direct donations, making a referral or volunteering contact the foundation at 1-800-676-WISH. Donations are used locally unless the contributor designates it to be used in another area.