Kaitlyn is 19 months old. Her daddy, Chip called me back in January to discuss capturing some images of her and some with her new brother and family. You see Kaitlyn has Neimann Picks type A. This is an autosomal recessive disorder that is just unimaginable for a family to go through. This is Kaitlyns story…
“My name is Chip Bourgeault. My daughter Kaitlyn Kay Bourgeault was born on 7/1/2009 a seemingly healthy girl. She had a number of complications along the way that other children didn’t have, but we wrote off the majority of it to her just getting sick from daycare. By about 7 months we and the doctors began to notice she wasn’t reaching milestones of talking, sitting, or crawling. After exhaustive visits with the top doctors in our area, we received results on April 23, 2010 from a blood test that indicated she had an extremely rare fatal and degenerative disease called Niemann-Pick type A for which there is no cure or treatment. Her body lacks an enzyme that breaks down a fatty substance in her cells. Ultimately this fatty substance builds in her cells and slowly causes her to wither away and develop severe neurological disabilities including the loss of muscle use, loss of ability to swallow, and eventually death by the age of 2 to 3. She is currently 18 months old. We are not sure whether the time we have left will be 2 months or a year, but we know her progression continues to worsen as time goes on.
I came across the Now I Lay Me Down to Sleep website and wanted to share our story with you and find out if families like ours fit into the services offered by the Now I Lay Me Down to Sleep foundation. Prior to her diagnosis, my wife and I both worked and we were well off enough to afford photography sessions every three months for Kaitlyn’s first year of life and we cherish some of those photos the most. As you can imagine, the diagnosis turned our world upside down. We relocated back from Dallas to Charlotte shortly after getting the news to be back near family, my wife quit her job to stay home full time and care for Kaitlyn, and the medical bills don’t afford us the ability to do professional photography or much else any longer.”
Hearing this story absolutely broke my heart. I have 6 healthy children and I can’t imagine the pain they are going through. NILMDTS is not really directed at this kind of service, but I am so glad they found me anyways. Kaitlyn was scheduled for a surgery, so we got her in on the weekend before. Chip was concerned that she may lose some of her spirit going through the procedure, and wanted to make sure we captured her how she is now. Fortunately it looks like she is doing wonderful and spirit filled:) This family is going through so much and Im sure would love the support of as many people as possible. If you’d like to follow Kaitlyn journey, or send her parents a msg of encouragement, please do. Her blog can be found at
I know they are trying to raise funds for her care and are doing an auction with the Cajun Canvas in Charlotte! Take a look and see if there is anyway you could help:)
Here are some of my favorites from our session in January! God Bless you sweet girl:)
The worship pastor at our church and his beautiful bride just had their sweet little girl Ezra Kay. Big blue eyes and a sweet disposition, we had a great time capturing her newborn images. Her big sister is such a good mommy too! Take a peek at this sweet little one:)