FAMILY #1

Dennis (Dad), and Melissa (Mom) 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 in November 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.  In December 2008 he was also diagnosed with Infantile Spasms (IS).  This is the disease that took Jameson’s life in 2006.

In his first year of life Nathan has had eight brain surgeries, a shunt removed and installed multiple times and an additional eye surgery.

FAMILY #2
Jill (Mom) and her husband, Joe, have a 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.  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 2009 for two weeks, and the other in April of that year 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 2^nd[2009], 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!”

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
Donesa (Mom) and Anthony (Dad) have a little girl, Basha (age 8).  In February 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 2008 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”.  

FAMILY #4
Single Mom, Toshia, 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 lost her Mother and Father 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 receives virtually no child support.  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. The family may be homeless soon and due to the extreme care needed by her child, she has no current hope for employment.

FAMILY #5
Mom and Dad, Ann and Dennis, are raising two boys, Dylan (age 5) and Ryan (1 ½ years).  Ryan was diagnosed with Infantile Spasms at six months of age and since then has been diagnosed with hypotonic cerebral palsy, but he is sitting up, crawling and standing with support.  Ryan’s seizures have stopped and now they are they are trying to get him caught up.  He still on the Ketogenic diet and Ryan is starting to say his first word, “Mama”.  His Mom says, “We will never give up on him, he will meet all his milestones. That’s what I believe.”  With love like that he will!

Dad got laid off shortly after Ryan’s diagnosis and has been unable to find steady work.  This family is currently leasing a home but will be forced to move shortly as the home is being sold.  Ann intends to start college in the fall if they can manage the cost in addition to their change in housing.

FAMILY#6
Brenden is a 9 month old who lives with his Mom, Sabrina, and Dad, Brian.  Brendon was diagnosed with Fetal Depakote Syndrome and demonstrates delays in all areas of development.  Dad was severely injured in October 2009.  He is permanently paralyzed and is also blind from complications.  Mom has a seizure disorder and has been staying home to take care of Brenden.