Many of you know that I am a stay at home mother. To remain sane, I joined the MOMS Club. I’ve meet so many wonderful women through this group. And I’m very thankful to have the pleasure of getting to know this family. This is Heidi Robertson, her husband, Brett, and their two lovely daughters, Lily (age 2) and Kate (age 7 months).
On July 27, after many months of doctor appointments, tests, and struggles, Lily was diagnosed with Metachromatic Leukodystrophy (MLD). A paragraph from Heidi’s email to family and friends explains her situation best:
It is a genetic disease and not contagious. Brett and I both carry the recessive gene for it, and have found that Kate is also a carrier, but doesn’t have the disease itself. In this disease, Lily lacks the ability to process a certain lipid called sulfatide. As a result over time these sulfatides build up in her body and cause a breakdown of the myelin sheath which protects her nerve fibers and her nervous system stops working properly.
Basically, over the next couple of years, Lily will continue to regress physically, losing her eyesight and hearing along the way, until she becomes paralyzed and eventually comatose. Most kids who have late infantile stage of this disease, like Lily, have a life expectancy of about 5 years. There is no known cure or treatment for this disease.
It is beyond devastating news and, as a mother, it is something that none of us should ever have to face. I’ve always known that Heidi was a strong woman. She’s very organized and a definite go-getter, but her strength and faith throughout receiving this news and watching her work through all of the challenges have completely amazed me.
As I mentioned above, Heidi and I are members of a MOMS Club. MOMS stands for Moms Offering Moms Support and that is exactly what this group has been doing for the family. We babysit Kate, run errands, hang out with her, bring her meals…basically anything that we can think to make life a little easier. I couldn’t be more proud to be associated with this terrific group of women. If you’re interested in following Lily’s story and learning ways that you can help ease the burden on this family, please visit their blog. Heidi and others have updated it with tasks and/or meals that you can do to help the family. Our MOMS Club will also be filling their freezer with meals and snacks, so that the family does not have to worry about preparing meals and is still able to eat healthy. If you would like to participate in this, please let me know.
I was honored when Heidi asked me to photograph their family and I hope to be able to help them document more of sweet Lily’s life and help share her story. Please keep this family in your thoughts and prayers. Here are some highlights from our session.
