I am thankful for Kathleen Scott
Being thankful; so many reasons! My heart is hurting for someone I don’t even know.
Hit rewind…
As you know we home school, we used to home school at a school in Somis called Somis Home Study. We were there from fall of 2006 to the end of the school year in 2011. The kids went to school once a week while at Somis. My very first year there Jake and I would drop off Mikayla then go about our day and pick Mikayla up. Over time when we went to pick up Mikyala I would always see this mother of a homeschooled student in her car. She always looked so sad also she was never very talkative. I would just smile and she would smile back. I never bothered her much, her sister often picked her daughter up, and I got to know her sister just in passing. I still always wondered what this mom was going through. I would see her and I would put this sweet nameless mother in my prayers. I got to know her daughter because she and Mikayla played on the playground, she was a delight but I also sensed sadness in her as well.
One day I think it was our second year end at Somis at the park awards ceremony. I went to sit on a bench to watch the kids; this mother that I always carried a heavy heart for was on the bench. We exchanged the usual mom on the bench exchanges and then we began to talk. I think the conversations opened because I was stressed about the wind with Jacobs’ lungs, and he had to use his inhaler. She then asked about it and told her my story with him. After talking with her about lung disease I learned about her struggle. I felt so small at that moment. She began to tell me about her beautiful daughter Jacque and her death to a preventable horrific disease called Globoid Cell Leukodystrophy, more commonly known as Krabbe (crab ā) Disease, is an inherited neurodegenerative lysosomal enzyme disorder affecting the central and peripheral nervous system. It was a mouthful, and my heart was so heavy it hurt to swallow. During our conversation she had told me that if our state had the Krabbe screening in the heel prick New Born Screening test her daughter would be alive today. New York is the only state that has screening for it at this time.
I can say this mother is my friend now. She is one of the strongest women I have ever met. She started a charity event called Drive for Hope. It is a yearly golf tournament in honor of her daughter and many other children affected by this horrific disease. The monies raised from the event go to Hunters Hope; a foundation started by Buffalo Bills player Jim Kelly and his wife Jill. Hunters Hope is named after their son Hunter who also lost his life to Krabbe. Kathleen also raises money for the foundation at Jacque’s Celebration of Life in July. She is also the National Family Support person for Hunters Hope.
Fast forward to today…
Today I had a photo shoot with the family that won my photography services at Jacque’s Celebration of Life. I am thankful I am able to do this for Hunters Hope. When I got home I saw a post on facebook from Kathleen and it was one about a sweet little girl from Salem, OR who lost her life to Krabbe at 2:44 PM today. I was on my way to my shoot at that time, I feel so bad for the family.
You never know who you are going to allow in to your life and heart. Then when you reflect, you look back and see why you have these friendships and how they make you grow. I am so thankful that God put Kathleen Scott in my life. She has no idea, but she has taught me so much. Please take the time to check into how you can help
Hunters Hope, and to check into
Supplemental Newborn Screening if you are expecting or know somebody that is. It can save a life!
Today I pray for Cassin-Potts Family of Salem, Oregon, for the loss of their daughter. Rest in peace Anaya!