Casper's Story

Images Captured by Asher Images

 With a due date of December 31st, Tiny Light Casper was determined to be one special baby right from the beginning. After a difficult pregnancy, he arrived 14 weeks early, weighing just 1 pound 11 ounces.  Doctors expected him to be in hospital until at least New Year’s Eve, but this “Little Spirit Boy” proved them all wrong. Casper got to celebrate his first Christmas at home with his parents and two siblings.

Casper spent 76 days in the NICU battling several medical issues.  It turns out mom Amy’s placenta was full of infection, which was passed on to her baby. Casper had to fight that off plus deal with apnea and heart spells where his heart rate would drop dramatically. He also endured two bouts of a severe intestinal infection unique to preemies. Through all of it, this little fighter has thrived.

Now Casper is at home, but he has a few major health hurdles ahead, includingeye disease and surgery for two hernias. However, the biggest challenge he faces is an extremely severe allergy to animal protein. This means Casper needs a special formula that is very costly – and not covered by health insurance. The family is struggling to find a way to pay for the extra expenses. With two other children, 6-year old Anastasia and 5-year old Ephraim, who are also special needs, parents Amy and William are stretched to the maximum.

The family’s first photo session at the hospital included one of Casper’s primary nurses Loretta. “Loretta was so amazing with Casper and was like a second mom she just loved our little boy so much.” The upcoming at-home session will include the whole family.

It has been amazing for the entire family to be together through the holidays. There is a big celebration planned to officially welcome Casper home early in the New Year. And though the path ahead is not easy, there is so much love to pave the way. “No matter how overwhelmed we may feel, when we see him we are just in awe of him. We feel like he completes our family and brings so much goodness, joy and light to our lives. We can’t imagine Casper not being here.”

Written by Elaine Yong

Donovan's Story

Images Captured by Asher Images

Meet Tiny Light Donovan. He loves shaking his maracas and enjoys spending time in his therapy pool. His brother and sister talk to him, read to him, and play with him every day. He can’t communicate verbally, but expresses himself by clapping and humming.
In August 2010, Donovan was a healthy 8-year-old boy. In the following months, his health rapidly deteriorated. Donovan has severe brain damage and is now deaf, blind, and mute. He also averages 3-4 seizures a day and is fed with a GJ tube. In July of this year, Donovan’s family was told that he likely had Alper’s disease, a mitochondrial disease that consists of seizures, blindness, deafness, liver damage, and eventual death. However, a month later when Donovan was retested, the tests came back negative and he currently has no diagnosis. He has been tested for viral, bacterial, autoimmune, mitochondrial, environmental, and genetic diseases; however, doctors have yet to find out what caused his health to deteriorate.
His mother’s attitude remains positive. Her message to other parents is to “look at the strength your child has, take that strength, and go with it.  Wake up each day and tell yourself it's a new day and, good or bad, your child made it another day.” Donovan still has challenges ahead but as his mother says, “he is a miracle and I believe he will fight as hard as he possibly can.”

Story by Emily Harrison