Once again, our friends, new and old, have amazed us with their generosity! This year we raised in excess of $4,100 and adopted four families. Here is a bit of their stories:
Machita, a 23 year old single mother, has one beautiful son, Jaylin. Jaylin was deprived of oxygen during his delivery and had severe developmental delays including contracting Infantile Spasms. Many of you will be familiar with this form of seizure activity as it was the disease that eventually took Jamie from us. This type of seizure disorder is the worst possible kind for a child under the age of five and kills one in five children who get it. Of those who do not die, 80% will be severely to profoundly retarded – meaning that they will not be able to function to any degree in a normal capacity or care for themselves ever. The remaining 20% will be mildly to moderately affected.
UPDATE AS OF DECEMBER 2008
Jaylin passed away at the age of 21 months in March 2008. He died from complications relating to Infantile Spasms. Jaylin was buried in one of the outfits that we gave him for Christmas. When we adopted this family they were on public assistance and Jaylin had never had a “brand new” outfit of his own. Since Jaylin's passing, his mother, Machita, told us that she is moving to Wisconsin for a job in the health care field and intends to pursue her education also in the area of health care.
Melissa, a single Mom with two girls, Destiny (age 3) and Haley (age 5) is pregnant and due in the summer of 2008. Destiny is her special needs child. She has Pulmonary Vessel Disease (PVD) (Disease of the pulmonary blood vessels which are those blood vessels which carry blood to and from the lungs) and Wiedemann Rautenstrauch Syndrome often commonly known as “the aging disease” – most children with this disease do not live past the age of five (*see information from Google search below for description). She is on a feeding tube and is “failing to thrive”. The family was in desperate need of food. This family has some “basic needs” requirements.
*Wiedemann-Rautenstrauch syndrome (also known as neonatal progeroid syndrome) is an extremely rare genetic disorder characterized by an aged appearance at birth (neonatal progeroid appearance); growth delays before and after birth (prenatal and postnatal growth retardation); and deficiency or absence of the layer of fat under the skin (subcutaneous lipoatrophy), causing the skin to appear abnormally thin, fragile, and wrinkled. In addition, for reasons that are not understood, abnormal deposits of fat may accumulate around the buttocks, the areas around the genitals and the anus (anogenital area), and the area between the ribs and the hips (flanks).
Affected infants and children also have distinctive malformations of the head and facial (craniofacial) area including an unusually prominent forehead (frontal bossing) and sides of the skull (parietal bossing), causing the head to appear abnormally large (pseudohydrocephalus); unusually small, underdeveloped (hypoplastic) bones of the face and abnormally small facial features; a small 'beak-shaped' nose that becomes more pronounced with advancing age; and/or sparse scalp hair, eyebrows, and/or eyelashes. Most infants and children with Wiedemann-Rautenstrauch syndrome also have unusually thin arms and legs; abnormally large hands and feet; progressive neurological and neuromuscular abnormalities; varying degrees of mental retardation; and severe delays in the acquisition of skills requiring the coordination of mental and muscular activities (psychomotor retardation). In addition, in many cases, affected infants and children are prone to repeated respiratory infections that may result in life-threatening complications. Wiedemann-Rautenstrauch syndrome is inherited as an autosomal recessive trait.
UPDATE AS OF JANUARY 2009
This family was extremely grateful for all of our assistance. Because of the generosity of our donors this family was given a substantial supply of food and food gift cards as well as clothing and toys for the children. This eased the burden on Mom, Melissa. Last Spring, Destiny graduated out of the MIPP program and would have been in the program for special needs children age four and over in the Fall, but her family moved away.
Amber is a single Mom with two girls, Alexa (age 1) and Brooke (age 2). Alexa is the special needs child and has Shaken Baby Syndrome reportedly due to abuse from her Father when her Mother was not present. Amber left her job to care for her daughter and now lives with her mother, Julie, who is working to support the family. Alexa is on a feeding tube. This family needed all basic necessities including: clothes, diapers, wipes and food.
UPDATE AS OF JANUARY 2009
Alexa is still on a feeding tube and is now also on oxygen and pain medication. This family is doing well. Amber has regained full custody of Alexa. The father has been sentenced and is now serving a term in prison. Julie and Amber continue to work hard at their jobs and taking turns caring for the girls. Julie reported that the clothes, diapers, wipes, food and gift cards came at a time of real difficulty for the family and helped to ease a great deal of the financial and emotional burden that they were experiencing. The dress clothes for the adults were used for numerous court appearances that they had to attend due to the physical trauma suffered by Alexa. In the spirit in which they were given, as the girls have outgrown the clothes, Julie reports that they have passed them on to others in need.
Logan’s family is made up of Jessica (age 22), Daniel (Age 25), Logan (1 year), Kayla (Age 3) and Jacob (Age 8). Dad lost his job and Mom works midnights at a local retailer to try to make ends meet. Logan is the special needs child who had a twin that died at a couple of months of age. He was born very premature and has cerebral palsy. He is functioning at developmental age of six months. The family is struggling and had a car accident since we adopted them which totaled their only vehicle.
UPDATE AS OF JANUARY 2009
Dad, Daniel, has gotten a job and the family has purchased a car. The family’s Maternal Grandmother passed away in 2008 and because of her young age, has left a young son for Jessica and Daniel to care for and raise. The gifts, food and gift cards helped them through a difficult time. The gas cards helped them to get Logan to his numerous doctor's and bracing appointments for his cerebral palsy. They are still struggling, but are very thankful for our gift of Christmas caring!
In 2007, we partnered with Kohl’s (at 26 Mile Road and the Van Dyke Expressway) to provide for the needs of our families. Items were purchased at other retailers as well, but Kohl’s offered us a discount of approximately 65% on all items so the bulk of our shopping, where possible, was done with them. We cannot say enough about how helpful Kohl’s, their staff and manager (Mario Estrada) have been throughout our 2007 fundraising efforts. Not only did they offer us an amazing discount on the items that we needed (meaning that we received approximately $6,000 worth of goods for $2,000 worth of payment), but they also provided volunteers to wrap the gifts and donated a $500 cash contribution for our adopted families. You cannot ask for a company that is more dedicated to the community and the welfare of children! Thank you Kohl’s!!!
Here is a list of general items that we provided to our families, please note that it is not completely comprehensive:
Kroger donated a $25 gift card and Costco donated $100 in gift cards. We also had a number of items that were donated that were in miscellaneous sizes or were duplicates for our families. We wrapped up these items (noting the items type, size and gender on the tag) and gave them to the MIPP program to distribute. The MIPP program brought a commercial size truck to pick up our donations and take them back to their facility to distribute to the families.
YOU ARE AMAZING! Many thanks to all who participated. We hope that we can count on your support again next year as we continue to try to make our world a better place for children and families who need a temporary hand up.
Jamie’s Smiles is a charitable fund held & administered by the Shelby Community Foundation PO Box 183181, Shelby Township, MI 48318 - 586/909-5305
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