For 2006, we came to you with the story of two families in need of help. Following are brief reminders of their stories:
Family one was made up of three people – Mom, Dad & Ethan. Ethan was a 17 month old little boy who was developmentally delayed and had been diagnosed with leukemia. Mom did not work, as Ethan needed special care and needed to avoid exposure to “outside germs” whenever possible due to the medications he was on. Ethan had numerous appointments for chemotherapy, therapy and general doctor visits. Ethan’s father was working as many hours as he could get through a temporary agency due to the poor job market. They got rid of their family dog because they could not afford to feed and properly care for a pet. They needed jackets, shoes, boots, clothes, food and gas cards.
UPDATE AS OF DECEMBER 2008
Ethan passed away in 2007. This family has moved, the father now has a job. They send their thanks and are grateful for MIPP’s assistance with Ethan’s therapy and for our Christmas care, but wish to mourn in privacy.
The second family was made up of four people – Wendi (Mom), Dad, Gage (5 years old) and Kelsi (2 years old). Kelsi had a heart transplant at one month of age and was on an immunosuppressant to prevent rejection of the new heart. As a result, she was isolated from as many germs as possible. She could only leave her home for doctors’ appointments and Mom quit working to tend to her medical needs. She was diagnosed with Pfeifffer’s syndrome (a yahoo search yielded the medical basics listed below if you are interested) and her medical problems kept her confined to her home. Gage had severe allergies and Mom needed to be available for emergency situations at school. They needed jackets and outerwear, boots, shoes, clothes, food and gas cards.
UPDATE AS OF DECEMBER 2008
This family has relocated to Indiana due to the father's job. Mom, Wendi, sent an email reporting that they are all doing well in their new home. Gage continues to suffer from numerous allergies, but is doing well in school. Wendi reports that they have decided to let Kelsi enjoy life and are not keeping her homebound. She has been taking dance lessons and recently performed in her first recital. Wendi says it was a difficult decision to take a chance at exposing Kelsi to germs and other children (she continues on medication that lowers her immune system that is necessary for her heart transplant). She has enjoyed being in classes with her friends. Because the family has allowed Kelsi to be with more people, Mom has been able to continue her career as a cosmetologist. The gifts, food, gift cards and toys were a tremendous help in 2006. At that time, Mom was unable to work as she could not leave Kelsi and Dad had his work hours cut. It was a very difficult time financially for them and the donations helped them so that they could pay their mortgage and utility bills. They send their thanks!
I am pleased to inform you that thanks to the generosity of people like you, we raised over $1,700.00 to help these families! We adopted two families and gave a third family a gift card toward food. Here is how we spent your kind donations:
- Snow suits for each of the 3 children
- A pair of shoes for each of the 3 children
- A pair of boots for each of the 3 children
- 2 pair of pajamas for each of the 3 children
- Hats and gloves for each of the 3 children
- Socks for Ethan & Gage
- Underwear for Kelsi
- Crib Sheets
- 13 educational toys between the 3 children
- 10 outfits for Ethan
- 8 outfits each for Kelsi and Gage
- Books for each of the 3 children
- Clothing for Ethan’s parents
- Coats for Kelsi & Gage’s parents
- Hats, scarves & Gloves for each of the parents
- Over $550.00 in food, diapers and gift cards for these items
- $125.00 in gift cards for gas
And even more items were donated already wrapped or used for the use of our families. Thank you for helping! And if you were unable to help for Christmas 2006, please keep us in mind for next year! We adopt families every year between Thanksgiving and Christmas.
What is Pfeiffer Syndrome?
Pfeiffer Syndrome (first reported in 1964) is a condition resulting from premature fusion of the sutures of the skull and deformity of the skull. Characteristics include:
- skull is prematurely fused and unable to grow normally (craniosynotosis)
- bulging wide-set eyes due to shallow eye sockets (occular proptosis)
- underdevelopment of the midface
- broad, short thumbs and big toes
- possible webbing of the hands and feet
Why did this happen?
There is no link between anything the mother did or did not do while she was pregnant and the occurrence of Pfeiffer Syndrome. Doctors believe it is caused by changes in the gene (FGFR 1 & FGFR 2) mapped to chromosome's 8 and 10. The cause of the change is not currently known.