I do not know if you are aware of the excruciating journey our founding rector, Howard Park, and his family are following. Howard’s granddaughter, Caroline, has been diagnosed with an extremely rare, incurable disease called Batten’s Disease. Her family became aware of this tragedy only in 2013.
Caroline is just 14. She was born a happy, healthy baby. When she was in kindergarten she started demonstrating some autistic behaviors and learning disabilities and was diagnosed with that disease. She did however continue to make slow progress in school. In second grade she began having Grand-Mal seizures and was diagnosed with a seizure disorder, which for the most part has been managed with medication. She has had several hospital stays due to complications from medicines; however, she has been stable for the past year.
In third grade she ran in 2 – 5K runs with her older sister, who could barely keep up with her, she was so fast. By fourth grade she started having difficulty with balance and was not able to run anymore. She saw doctors in the movement disorder clinic at St. Louis Children’s Hospital. After much testing including MRI and spinal taps, no reason for her motor regression could be found. When she was in fifth grade, Kelly and Than started noticing she was having difficulty seeing and locating objects. She received a retinal test and the results showed no retinal response. Caroline was blind. Because of the retinal test, they suggested she be tested for something called Batten’s Disease. She received a genetic blood test and in July of 2013 she was diagnosed positive for Batten Disease. By this time she was using a walker for stability to walk, and several months after her diagnosis she was using a wheelchair full time. She is currently 14 years old, unable to walk and totally blind. Her speech has slowed to 1-2 words and her mental ability has diminished significantly. Caroline attends a school for special needs children in St. Louis County.
On a personal level, my family is uniquely connected to Howard Park’s. My only child, Dan, was best man for Than, Howard’s son. Than was Dan’s best man as well. Than is also godfather’s for my son’s two boys.
Family and Friends of the Park Family are hosting an event, “Caring for Caroline” at the Atomic Cowboy Restaurant on Thursday, August 13th, to raise funds to benefit Caroline and the Batten Disease Support & Research Association, a 501(c)3 non-profit. All donated funds go directly to supporting Caroline and BDSRA. The family is hopeful of purchasing a special lift van to transport Caroline, as well as to donate funds to BDSRA for additional research of this dreaded disease.
St. Martin’s has always been there for our members and their families and this is a very special opportunity for us as a caring parish. We are asking all of you to look into your hearts to make a donation and/or contribution to the silent auction occurring at the fundraiser. We are also asking as many of our St. Martin parishioners as possible to attend the August 13th event. Your support will definitely make a difference in Caroline’s life, and be such an appropriate way to show our ongoing love and support of our founding Rector’s family. Please do what you can……
We hope that we can count on your support. Please email me for an auction donation form or for more information.
Caring for Caroline—Fundraiser Volunteer