One morning I was talking to my mom, as I often do, and she told me about a woman my sister goes to church with who had just received some heart-breaking news about her youngest child. When I talked with my sister shortly after and got an idea of what was going on I instantly thought of the song, “Because I have been given much” and contacted Emily immediately. I offered her the most meaningful thing I could think of, a photo shoot of her family. Emily was so kind and grateful and it was such a fun evening getting to meet her family and dote on sweet baby Lucy. Her giggles were contagious and I loved how in almost every single picture someone is holding onto her leg or touching her in some way. I could feel the love and admiration each member of their family felt for each other. It was truly my honor to share the talents my Father in Heaven has blessed me with to bring the blessing of tangible memories to a family who will treasure them forever.
This is the message Emily shared on Facebook about Lucy’s diagnosis:
“Friends-we have some crazy news to share–crazy bad news. This past several months we have been working with a team of doctors to determine why our baby Lucy was having developmental delays. The end of March we learned she had a visual impairment. This was shocking to us to say the least. As we met with a geneticist she expressed that all of Lucy’s symptoms could be traced back to one genetic explanation. We arrived at a diagnosis much sooner than expected and again we were shocked.
Lucy has a rare genetic disorder called GM 1 gangliosidosis. There are about 20-30 GM 1 babies born world wide each year. It is an autosomal recessive disorder, as is the commonly known cystic fibrosis. (more info atwww.ntsad.org). Both Don and I are carriers. Lucy inherited a mutated gene from both of us. Our other three kids do not have the disease. She has a limited amount of an enzyme needed to break down ganglioside. Because of this her nerve cells in her brain and spinal cord will be destroyed. She has the infant onset of the disorder, and she will soon start losing her abilities to eat, talk, move, etc. Her life expectancy is short, around three years. There is no treatment or cure.
We share this sad news with faithful hearts. We believe that Lucy and all of us had our beginnings not in our earthly birth, but as spirit children of God, our Heavenly Father. We will be together again with Him and our Lucy.
Our focus is to enjoy every moment with her and make this time as a family beautiful. Our “right nows” are great. Although she is delayed, she has yet to show signs of the regression we know is coming. Lucy is a sweet heart. She loves her brothers and sister. She loves to eat and signs all the time that she wants to eat (we did not teach her the sign). She loves bath time and she loved the lake. She loves to be with and “talk” to her mommy. She has a favorite toy and loves to play with her daddy. She just lights up with him.
We will continue to post pictures of our family like always, and letting everyone know about her condition now will make it easier for us to post things about our family and specifically Lucy as time goes on and her disease progresses. We love you all and would appreciate your thoughts and prayers for our family.”
If you are the praying type, please keep this amazing family in your prayers.
These are fantastic! I love this wonderful family!