ROY -- For Neil and Haley Kraaima, the greatest gift this Christmas season is the continued good health of their three children. They have learned the true meaning of love, hope and charity.
"Our family is unique in the sense that we have three children, all born with a different life-threatening disease, and yet we all have survived, grown stronger and become more committed to help others through similar situations," says Haley Kraaima.
Once you have been through, not once but three times, the nightmare of possibly losing a child, watching them suffer while fighting for their lives, and then coming out on the other end with hope for a future, you know that you must tell your story and become a shoulder for others to lean on, Haley says.
Nicki: Neurofibromatosis 1
Their story started 12 years ago with the birth of Nicki, who was a normal, healthy baby. It wasn't until a year ago that they discovered she has Neurofibromatosis 1 (NF1), a rare disease in which nerve tissue tumors form in the skin, bottom layer of skin and nerves from the brain and spinal cord. NF1 affects about one out of every 3,000 children born each year.
NIcki got sick with the flu around the first of this year and wasn't getting better. They noticed light brown spots forming on her skin, but thought they were just freckles. In fact they were a characteristic of the disease.
Primary Children's Medical Center confirmed her condition and treatment began.
"Luckily, it seems she has a mild form of NF1, but it is an underlying thing that could cause more problems in the future," Haley says. "Nicki is very compassionate and sensitive to others because of what she has been through and what she has seen her brothers go through."
Evan: Biliary atresia
Evan was born in August 2003. When he was about seven weeks old, his skin started turning yellow. Evan was sent to a liver specialist, Dr. Linda Book, at Primary Children's for further tests. Because Evan was then 4 months old and growing normally, his parents weren't too concerned. But he was immediately admitted and the next day a biopsy confirmed that he had biliary atresia, a disease in which the liver is poisoned because the ducts aren't there to drain the bile into the intestines and out of the body.
"Now we were hearing words like liver failure, transplant and surgery. We were scared to death," Haley says. "We were told we had three days to decide on a liver transplant or a surgery called a kasai procedure that would create a new bile duct by attaching the intestines right to the liver."
They decided the kasai was the best way to go and Evan had the surgery on Dec. 9, 2003. After 24 hours, his coloring returned to normal and he was smiling and feeling much better. Evan is now 8 and is still living with the makeshift surgery.
Book says about one in 15,000 to 20,000 babies is born with biliary atresia. She says the kasai procedure usually is a temporary fix that lasts for a few months, allowing the baby to grow and be healthier when a transplant is performed.
"But Evan has lived eight years with this. He will eventually have to have a liver transplant, but for now he is constantly monitored and taking medications and is doing as well as can be expected," Book says.
Haley hopes to bring awareness to the importance of organ donation. She has created a Facebook page called Awesome Evan that tells his story in hopes that others will be encouraged by his progress. To date, it has over 600 followers from several countries who can vent, ask questions, dispense and receive advice, and share experiences.
Cy: Tetralogy of Fallot
The Kraaima's third child, Cy, was born in October 2006. Within hours, Haley notice that he was very cold to the touch. After five days in the NICU, it was discovered that he had a heart defect called Tetralogy of Fallot and needed immediate surgery. He was then taken by ambulance to Primary Childrens.
"We were scared and sad and it was happening again, only with something different," Neil says. "We wondered what was wrong with us that we couldn't have healthy kids."
But they were told that it is just an extremely rare thing that one family would have three children, all with different diseases with no known family history of any of them.
After many tests, they were told Cy was healthy enough to wait for surgery until he was 5 months old. On April 9, 2007, surgeons repaired four different defects in his tiny heart.
"The surgeons opened his tiny chest, took his heart out, fixed it and put it back in," Haley says. She says his prognosis is very good, although they keep a watchful eye.
Neil just tries to enjoy every moment he can with the kids. "I don't want to look back and wish I had done anything different, but that I was there for them always."
"We love and are so proud of all of our kids for what they have been through and in spite of it are normal, talented, fun-loving human beings. We take it a day at a time, and know that if there is something in the future, we will have the strength to handle it as a family," Haley says.
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