Here is the news story from News 14 Carolina! click here to watch video and see article
Young girl fights for her life against rare disease
INDIAN TRAIL, N.C. – With every breath, 2-year-old Kaitlyn Borgeault fights for her life. Her mother, Deanna, reads her familiar books for comfort. A rare and fatal illness attacking Kaitlyn's body will inevitably take her life.
"In just a short couple of minutes someone tells you your precious little girl is going to die," said Deanna Bourgeault.
Last April, Kaitlyn was diagnosed with Niemann-Pick Disease Type A. She lacks an enzyme that breaks down fatty substances found in every cell in the body. Her liver and spleen are swollen. Her health and eyesight are fading. Doctors say she won't survive much longer.
"She requires around the clock attention. It's been a steady decline of her abilities," said Chip Bourgeault, Kaitlyn's father. Kaitlyn is one of only five currently known cases in the U.S. She eats and takes in more than a dozen daily doses of medicine by way of a g-tube inserted into her stomach.
"The day before we found out about Kaitlyn's diagnosis, we found out we were pregnant with our son Cole," said Deanna. Like their parents, Kaitlyn's younger brother, Cole, is also a carrier of the Niemann-Pick gene, although, doctors say he doesn't have the disease. The odds of him having it are one in a million.
Emotionally drained, Deanna started an online blog to update family and friends and to raise awareness of the illness that's still obscure to doctors. Then, Deanna said the unexpected happened, "We started receiving all these different messages from people about how it's changed their perspective." Messages from strangers poured in including food from neighbors and donations for a mountain of medical bills.
The story of a little girl, who has only ever spoken four words, began to speak to thousands.
"When I started seeing the response I realized, this is why Kaitlyn is here," she said. As her days become shorter, the Bourgeault's faith grows stronger. A faith, they say, will carry them through the toughest battle they have ever faced.
"Whether it's for a moment that it touches their heart while they're reading the blog or whether it's for a day, and they hug their children a little tighter and are more thankful that their children are healthy, or whether it's for a lifetime, she has made a difference," she said.
Young girl fights for her life against rare disease
INDIAN TRAIL, N.C. – With every breath, 2-year-old Kaitlyn Borgeault fights for her life. Her mother, Deanna, reads her familiar books for comfort. A rare and fatal illness attacking Kaitlyn's body will inevitably take her life.
"In just a short couple of minutes someone tells you your precious little girl is going to die," said Deanna Bourgeault.
Last April, Kaitlyn was diagnosed with Niemann-Pick Disease Type A. She lacks an enzyme that breaks down fatty substances found in every cell in the body. Her liver and spleen are swollen. Her health and eyesight are fading. Doctors say she won't survive much longer.
"She requires around the clock attention. It's been a steady decline of her abilities," said Chip Bourgeault, Kaitlyn's father. Kaitlyn is one of only five currently known cases in the U.S. She eats and takes in more than a dozen daily doses of medicine by way of a g-tube inserted into her stomach.
"The day before we found out about Kaitlyn's diagnosis, we found out we were pregnant with our son Cole," said Deanna. Like their parents, Kaitlyn's younger brother, Cole, is also a carrier of the Niemann-Pick gene, although, doctors say he doesn't have the disease. The odds of him having it are one in a million.
Emotionally drained, Deanna started an online blog to update family and friends and to raise awareness of the illness that's still obscure to doctors. Then, Deanna said the unexpected happened, "We started receiving all these different messages from people about how it's changed their perspective." Messages from strangers poured in including food from neighbors and donations for a mountain of medical bills.
The story of a little girl, who has only ever spoken four words, began to speak to thousands.
"When I started seeing the response I realized, this is why Kaitlyn is here," she said. As her days become shorter, the Bourgeault's faith grows stronger. A faith, they say, will carry them through the toughest battle they have ever faced.
"Whether it's for a moment that it touches their heart while they're reading the blog or whether it's for a day, and they hug their children a little tighter and are more thankful that their children are healthy, or whether it's for a lifetime, she has made a difference," she said.
Kaitlyn has made me hug my 2 yr old tighter and thank the Lord for his health. I can't imagine how you are preparing yourself to say goodbye but I'm lifting your family up in prayer often. So sorry you have to endure this but so glad you have Jesus to carry you through.
ReplyDeleteThank you for sharing Kaitlyn's story. We have lost two children, but still cannot imagine what you are experiencing. We will continue to keep you and your family in our thoughts and prayers.
ReplyDeleteThanks for sharing...
ReplyDeleteNanci & Mike
You have such an amazing family. I found your blog through a friend on facebook and think of of you guys daily. Like the news story reflects. . . She has made such an impact. God bless you all
ReplyDeleteOur family has gone through so much with our little girl, Ava. We are so blessed that she is happy and healthy now. Children are amazing and your little girl is incredible. Thank you for sharing your journey. It makes a difference to so many lives.
ReplyDeleteJessica Letourneau
(Kristen Dietz' neighbor)
I saw your story on News 14 last night and had to contact you. My daughter Zoe had Niemann-Pick type A/B. They called her a variant patient. She was 2 1/2 when she lost her fight in 2006. We actually took her to Duke for a stem cell transplant. the transplant actually worked but the NPD had already damaged her lungs worse than we knew and ultimately the disease got the last word. We live in Kings Mountain, about 30 minutes west of Charlotte. I had not heard of anyone this close to us having NPD. We still have Zoe's caringbridge site up if you would like to see her it's-www.caringbridge.org/visit/zoebachman. My story is very similar to yours. Zoe was diagnosed at 11 months old and I was 4 months pregnant with my son, Nash, who is a carrier. And I also believe that our sweet Zoe touched so many without having to say a word. We have had to rely on our faith to get us to where we are today.
ReplyDeleteI would love the opportunity to meet your family and especially Kaitlyn.
April Van Dyke
Proud mommy of an angel in heaven
zoenashmom@yahoo.com
She has made a difference. :)
ReplyDeleteAmen she HAS made a difference! I pray for your beautiful angel and family daily.
ReplyDelete