The community is coming together this weekend to help a little girl with an extremely rare genetic disorder.
Finley Sandiford is the 13-month-old daughter of Kimberly Sandiford, and the granddaughter of Bill and Lori Sandiford, Dana and Gale Watts, and Karen Boden. She was recently diagnosed with Pitt-Hopkins Syndrome.
Pitt-Hopkins Syndrome is a rare genetic disorder affecting a specific gene in chromosome 18, called TCF4. PTHS is characterized by intellectual disability and developmental delay, which range from moderate to severe. There are only about 50 children around the world that have been diagnosed with Pitt-Hopkins Syndrome and since it was discovered 35 years ago, there have been fewer than 300 diagnosed.
Most affected individuals do not learn to walk unassisted, and typically do not develop speech. Breathing problems are characterized by episodes of rapid breathing followed by periods in which breathing slows or stops. Episodes of hyperventilation and apnea can be triggered by emotions such as excitement or anxiety or by extreme tiredness.
Epilepsy occurs in most people with Pitt-Hopkins syndrome and usually begins during childhood, although it can be present from birth. Individuals have distinctive facial features that include thin eyebrows, sunken eyes, a prominent nose with a high nasal bridge, a pronounced double curve of the upper lip, a wide mouth with full lips, and widely spaced teeth. The ears are usually thick and cup-shaped.
Children with Pitt-Hopkins syndrome typically have a happy, excitable demeanor with frequent smiling, laughter, and hand-flapping movements. However, they can also experience anxiety and behavioral problems.
According to Bill Sandiford, Finley's development was first called into question when it was noticed she was not able to roll over or hold a bottle like other children her age. She was seen by several doctors and one doctor suggested they do a genetic test, which confirmed the diagnosis.
Exactly how the disease will affect Finley is not yet known. She will require years of costly medical treatment and therapy. Finley and her mother have recently moved to South Carolina to be closer to a Pitt-Hopkins Syndrome research and treatment center.
Friends and family have organized three fundraising events to help out Finley and Kimberly.
Starting at 9 p.m. Friday there will be a moonlight golf tournament in Washington Park. Two-person teams will use a glow ball to play in a nine-hole tournament. The fee is $10 per person, with food available before the start for a donation.
Space is limited, and those wanting to participate should contact the Deer Run Golf Course office at 544-2350 or email email@example.com to register. Spectators are welcome.
On Saturday, a softball tournament at the Robinson City Park will raise money for the Fight for Finley Fund. The co-ed pumpkin ball tournament is $100 per team and all of the proceeds will go to the fund.
Teams have until 5 p.m. Thursday to sign up by calling 562-7275 or emailing firstname.lastname@example.org.
For the less sports-minded, there will be an evening of food, music and entertainment at Quail Creek Country Club to raise money for Finley.
Starting at 5:30 p.m. with food, drinks and music, guests can bid on several silent auction items. At 7 p.m. there will be a live auction for some high-profile items and packages.
Some of the items up for auction will include trips to Silverton and Durango, Colo.; Innisbrook Golf Resort, Palm Harbor, Fla.; Nashville and Gatlinburg. There are driving-experience packages for Mario Andretti and Dale Jarrett. Sporting equipment, sports memorabilia, ball game and other sports-event tickets, iPads, golf clubs, landscape items, gift baskets and even 10 cubic yards of concrete are just a few of the donated items that will be auctioned Saturday night.
An account has also been established at First Robinson Savings Bank for Finley. All proceeds from all events will go to the Fight for Finley Fund.
Posted: Wednesday, July 16, 2014
Article comment by:
This article really upset me because Finley's daddy was not mentioned. I personally know this family and this will really upset them. Bill needs to put his personal feelings aside and include his son. I am so displeased with how this came out and Bill should be so ashamed of himself.