Jamie’s Smiles

An endowment fund dedicated to
helping special needs children


 

 

Christmas Giving 2009

 

 

This is the Bates family’s 13th year of adopting families with our family and friends and our 5th year adopting families through the Macomb Infant Preschool Program (MIPP).  As winter descends upon us and the weather turns colder and colder, we think often of those less fortunate than ourselves.  The families that we seek out every year who desperately need our help.  Their kids have no coats… they are sick… they are hungry… they are hurting…

Their stories touch my heart.  While writing this to you I found that I frequently came to tears because the families’ stories tore me up.  I was sharing with someone how very hard it is to accumulate all the “data” and “stories” about the families that we need.  We get A LOT more information and cannot pass it all on to you.  It is just too much.  So we boil things down to the basics and pass it along (and it is still a little long – sorry!).  This person was worried about how hard I take each story and suggested that I think of doing other things that would be easier for me, but someone has to do this.  These families have endured so much.  They need us so badly.  Yes!  It hurts to do this… memories of my lost son rear up… empathy for hurting babies and families strikes home… but SOMEONE HAS TO DO IT... please help me help them… by the grace of God it is not you… but these families live next door… they go to your church… their siblings play soccer or are in scouts with your sons and daughters…

 

Let's meet the families that we propose to adopt this year – There are a few quotes that the families have written themselves mixed in this year:

 

FAMILY #1

Dennis, a 28 year old Dad, and Mom, Melissa (age 30) are fighting hard to get their youngest son, Nathan, healthy.  They also have a daughter, Destiny (age 6) and a son, Tyler (age 6).

 

Nathan was born on November 5, 2008.  At less than one day old, the doctor diagnosed Nathan with an interventrical hemorrhage in both ventricles (bleeding on the brain) and he had his first brain surgery that day.  As a side effect of the surgery Nathan also has hydrocephalus (water on the brain).  He was hospitalized while this resolved and had to have a shunt put into his brain to drain the fluid.  On December 15, 2008 he was also diagnosed with Infantile Spasms (IS).

 

Dad writes this to us about when they were trying to find a way to help their son overcome IS.  He says, “The insurance said that they had to discuss it and see if they would pay $70,000 a month for the medicine.  After 5 days of spasming (which could cause brain damage) they finally approved it.  Then the company that had the order said it would take another 3 days to get it to us.  So I went to Ann Arbor and picked up the ACTH Acthar Gel.  We had to give him a shot in his leg once a day for 30 days.  He was in the hospital for 7 days that time.  While he was there he had his shunt revised again.  Nathan got an infection in his cerebral spinal fluid and was in the hospital for 3 weeks.  He had to have his shunt taken out completely then and external one put in to keep the fluid from building up.  The infection took 2 weeks of antibiotics to get rid of but during that time he had the external one replaced again.  After 1 week the internal shunt got installed.  Three days after that Nathan started eating again and they released him.”

 

In his first year of life Nathan has had eight brain surgeries, a shunt removed and installed multiple times and is currently scheduled for eye surgery in November. The family is trying hard to keep up with the bills, but they need clothing, food and gas cards badly!  We know what it is like to go through this kind of trauma over the holidays.  Please help us help this family and little boy.

 

Nathan, Destiny and Tyler Need: Winter coats, pajamas, winter clothing, shoes, socks, boots, hats, gloves, diapers, books, sheets and toys
Mom and Dad Need: Clothes, shoes, gas cards, coats and food

 

FAMILY #2
Jill is the 25 year old Mom.  Jill and her husband, Joe (age 30), have a 7 year old son named Joseph and two beautiful girls named Johonna and Jazmin.  Joe also has shared custody of his sweet 13 year old daughter from a previous marriage.  The day before Christmas 2008, Johonna and Jazmin were diagnosed with Pompe disease.  Pompe is one of the rarest genetic diseases in the world.  The disorder is estimated to occur in about 1 in 40,000-300,000 births and effects all the muscles in the body.  In January, Joe took a voluntary layoff because he was missing a lot of work helping to care for the children and being at of Children’s Hospital for emergency situations.  Johonna and Jazmin have power picks, feeding tubes and receive an IV infusion treatment for Pompe every other week at Children’s Hospital.  Johanna has been on a ventilator twice, once in January for two weeks, and the other in April for seven weeks and was already sent home once on hospice.  Jill says, “They told us she was going to die.  But she did not.  We actually got some much needed good news October 2nd, their hearts are getting better the treatment is working.  They can not tell is what will happen due to the fact that the treatment is only two or three years old, but we are hopeful….My husband and I take care of their every need.  I could not do this without him.  In this time of need we greatly appreciate your kindness and help.  Thank you!”


Johonna and Jazmin Need: Winter coats, pajamas, winter clothing, shoes, boots, hats, gloves, crib sheets and special toys for movement impaired
Joseph Needs: Winter coats, pajamas, winter clothing, shoes, boots, hats, gloves, bedding and toys
Mom & Dad Needs:  Winter coats, winter clothing, pajamas, shoes, boots, hats, gloves and bedding


Excerpts From Wikipedia Regarding Pompe Disease:

Glycogen storage disease type II (also called Pompe disease or acid maltase deficiency)  Infantile, or early onset, is noticed shortly after birth. Symptoms include severe lack of muscle tone, weakness, and enlarged liver (hepatomegaly) and heart. Mental function is not affected. Development appears normal for the first weeks or months but slowly declines as the disease progresses. Swallowing may become difficult and the tongue may protrude and become enlarged. Most children die from respiratory or cardiac complications before 2 years of age. The prognosis for individuals with Pompe disease varies according to the onset and severity of symptoms. Without treatment the disease is particularly lethal in infants and young children.

 

FAMILY #3
Mom, Donesa, is 31 years old and is married to Dad, Anthony.  They have a little girl, Basha (age 8).  On February 16, 2009, they had quadruplets - two boys: Antonio and Sebastanio; and two girls: Grace and Michela.  Sadly, baby Grace passed away the day after her birth.  The babies were born extremely premature.  They all have special health issues and anticipated developmental delays.  Michela is on an apnea monitor due to breathing issues and is constantly monitored for Hydrocephalus (water on the brain).  Antonio has a shunt, eyesight issues and developmental delays.  Sebastiano is under watch for a seizure disorder and rickets (according to Wikipedia: “Rickets is a softening of bones in children potentially leading to fractures and deformity.”).  Mom has been unable to work since last fall due to the difficulty of trying to carry four babies to term and now caring for her children full-time.  The family motto is “One day at a time”.  

 

Antonio, Sebastiano, Michela and Basha  Need: Winter coats, pajamas, winter clothing, shoes, socks, boots, hats, gloves, diapers, bedding/sheets, books, toys (they have very few)
Mom and Dad Need: Clothes, bedding, shoes, gas cards, coat

 

FAMILY #4
Single Mom, Toshia (age 28) has been caring for her three children, Talia (age 13), Nigeria (age 9) and Nasire (age 2).  Nasire has language, cognitive and social delays.  Toshia has had a difficult life.  Her Mother and Father passed away when she was very young.  She was then raised by her Aunt who died two years ago after struggling with cancer.  Toshia cared for her Aunt while she was ill.  Toshia is currently unemployed and only receives $46 per month in child support.  She is living with her brother in his fiancée’s home.  They are looking to start their own life and would like Toshia to move out.  Toshia was in the Work First program offered through the State of Michigan to obtain job training.  However, she had to quit the program when the daycare provided by the State made it clear that they were ill equipped to handle a child with Nasire’s delays.  The family does not have a car.  Food and clothing are in limited supply for both Mom and children.  This has become a problem as it gets colder outside and the children need to attend school.  Diapers and wipes are also an issue as Nasire has not yet been potty trained due largely to his delays.   Toshia s a devoted Mother who only wants what is best for her children.  The family will be homeless soon and due to the extreme care needed by her child, she has no current hope for employment.

 

Talia, Nigeria and Nasire Need: Winter coats, pajamas, winter clothing, shoes, socks, boots, hats, gloves, diapers, wipes, bedding/sheets, books, toys (they have very few)
Mom Needs: Clothes, bedding, shoes, boots, coat

 

FAMILY #5
Mom and Dad, Ann and Dennis, are raising two boys, Dylan (age 5) and Ryan (age 17 months).  Ryan was diagnosed with Infantile Spasms at six months of age.  Dad got laid off shortly after Ryan’s diagnosis and has been unable to find steady work.  Mom and Dad are having trouble keeping food on the table let alone paying the medical expenses.  This family is currently leasing a home and has had a difficult time keeping up with the bills, so they are doing home repairs on the house to have the rent lowered.  The landlord has been very good at working with this family so they will not lose their lease.

 

Dylan and Ryan Need: Winter coats, pajamas, winter clothing, shoes, socks, boots, hats, gloves, diapers, bedding/sheets, books, toys (they have very few)
Mom and Dad Need: Clothes, bedding, shoes, gas cards, food, coats

 

FAMILY#6
Brenden is a 9 month old who lives with his Mom, Sabrina (age 25) and Dad, Brian (age 27).  Brendon was diagnosed with Fetal Depakote Syndrome and demonstrates delays in all areas of development.  Dad was severely injured this past October in a motorcycle accident and is currently hospitalized with spinal cord injuries.  He is permanently paralyzed and is also blind from complications.  Mom has a significant seizure disorder and has been staying home to take care of Brenden.  The family needs food, diapers, clothing and appropriate toys as they have no “hand-me-downs” from previous children.

 

Brenden Needs: Winter coats, pajamas, winter clothing, shoes, socks, boots, hats, gloves, diapers, bedding/sheets, books, toys (they have no “hand-me-downs” from siblings)
Mom and Dad Need: Clothes, bedding, shoes, gas cards, food, coats


We know how tight money is this year for everyone.  However, as Christmas approaches and we all realize how much we have, both financially and in our family/friend support system(s), we ask you to take a moment and consider helping others.  Every penny counts.  Whether you can donate $5 or $500, we will put it to the best use we can and the value that our combined funds and efforts can have to others less fortunate than ourselves is tremendous.  We will pool the funds and meet as many of the needs of these families as possible. 


Last Year, Kohl's on 26 Mile Road in Shelby Township, generously gave us significant discounts on the merchandise that we purchased in their store.  As a result, everything bought at Kohl's cost about $0.35 on the dollar, they made a $500 contribution and they wrapped all of the gifts for our families.  They have agreed to help out again this year! 

 

Additionally, we have other vendors that give us discounts or contributions and contribute yearly because they care.  If we have more money than we need for these six families, we will adopt more families as there are others in need as we had to turn some down this year.  Also, because we ask that checks be made payable to the memorial fund of the: SCF - Jamie's Smiles (Christmas) your contribution is tax deductible (please speak with a tax professional for details).   If you prefer you can also contribute items, but these will not be tax deductible.  We also take gently used children’s coats in any size as there are many children in need of a warm winter coat in MIPP and new or left over Christmas wrapping paper.

 

If you are interested, please email me with your commitment and/or send your check made out to SCF – Jamie’s Smiles (Christmas) to us at: Shelby Community Foundation, PO Box 183181, Shelby Township, MI 48318 as soon as possible or drop me an email so that we know what kind of funding we have to work with this year.  We have started to purchase some items: coats, hats and gloves have been delivered and would like to deliver the rest of the items the end of November just after Thanksgiving.  Thank you again! 

 

I also need to make a plea for help!  Jamie’s Smiles yearly projects are getting to be too much for us to handle alone.  We need a couple of people who would be willing to help me out about 15-20 hours per year (we will accept less or more as you are able).  We want to keep doing everything we have been doing… BIGGER and MORE every year… but we need you to help just a little.  Please let me know if this is something you can do!


Thank you for time and consideration!

The Bates Family

 

PS  By way of background for those of you who are new to the invitation (please bear with me if you have seen this information before), for five years we have championed adopting families of special needs children through MIPP.  This is the organization that gave Jameson such phenomenal care and therapy while he was with us.  We choose needy families with children with special needs who need a "hand up."  Often, people as lucky as ourselves, do not realize the financial, physical and emotional burden of raising special children.  They are incredible!  They are worth it!  But fiscally speaking, they can set you back so that you can never recover.  In the 19 months that we had Jamie, his care cost approximately $40,000 out of pocket and we had EXCELLENT insurance.  You can imagine what it does to people with lesser insurance and with the loss of jobs in our state and the economy being in the dumper...  Anyhow, we try to help mitigate some of these costs for a couple of families per year...... 

 

 


Jamie’s Smiles is a charitable fund held and administered by the Shelby Community Foundation
PO Box 183181, Shelby Township, MI  48318 – Phone: 586/909-5305

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