Lyric LaRae's Health Journey

Lyric LaRae is our sweet baby girl who, at six months old, weighs a mere 8lbs 9oz (now 7 months 11lbs 3oz as of 5/15/22)(now 8 months 12lbs 5 oz 5/25/22) and has many health issues that have not yet been diagnosed. We have a long road ahead of us. As a result, I could not return to work and have been placed on an unpaid family leave. I will be sharing Lyric’s story and keeping you all informed.

Lyric’s Story:

Our precious Lyric has been battling feeding intolerance since she was two weeks old, which led her to get an NG (Nasogastric) Tube; this tube carries food and medicine to the stomach through the nose. The NG Tube would feed her at a particular rate 24hrs/day; after having the Ng Tube for a little over a month, she was still unable to tolerate her feeds or medication going into her stomach, which then led her to get an NJ (Nasojejunal) Tube, this tube carries food and medicine past the stomach into the jejunum (part of the small intestine). Lyric can tolerate Nj feeds, but over time we noticed she still wasn’t growing. In December, she had another hospital stay and was diagnosed with chronic failure to thrive and malnourishment. We still do not have a diagnosis for her feeding intolerance, malnourishment, and overall inability to gain weight.

On February 21st, she was admitted into Seattle Children’s Hospital, where she remains. On March 7th, she had surgery to place a GJ tube into her stomach, still feeding her through the small intestine. We have not yet found a diagnosis for those health concerns, but along the way, there was an accidental finding; while running blood work, they discovered that she was having low blood sugars, which led to her getting glucose checks every 1hr and transitioning to every 3 hrs. A typical range for glucose levels is 60-105. Lyric’s levels were in the 50’s, dropping down to as low as 22; at that point, her doctors put rescue measures in place, those levels led her doctors to contact The Children's Hospital of Philadelphia (CHOP). Her doctors were given instructions to give her glucagon injections to test how her glucose was releasing. This test led to a diagnosis called Hyperinsulinism (HI), meaning her body is making too much insulin and not enough glucose, causing hypoglycemia. HI is a rare genetic disease affecting 1 in 25,000 to 50,000 babies.

The treatment and care that Lyric needs are out of state at the Children's Hospital of Philadelphia. They have a center specializing in this disease that she has been diagnosed with called the Congenital Hyperinsulinism Center. They will do further testing, possible surgeries, give a more in-depth diagnosis of her disease and provide her with the correct treatments as there are many branches of hyperinsulinism. Without proper treatment, this disease has many symptoms such as causing irregular heart rate, fatigue, shakiness, breathing problems, weakness, seizures, strokes and is overall life-threatening low levels can also cause brain damage and heart failure.

Reasoning/Importance for our GoFundMe:

I was encouraged by a friend of mine, Lyric’s Seattle Children’s Care Team, and her Social Worker that it is okay to accept/reach out for help & that “ it doesn’t make you any less of a loving and caring provider for your child/Children”… As difficult as it is for me to ask/accept the help I must for the sake of my daughter's life and to care for my 4yr old son Kingston; who will need to be with his sister and me as we have already been separated for some time with limited visits due to covid restrictions and her frail condition… I just can’t leave him behind; the thought of it breaks my heart! With that said, I am stepping outside of my comfort zone to share my daughter's story and seek the help of my friends, family, and community to access the correct diagnosis and treatments that she needs. These Funds will help with bills, medical equipment not covered by insurance, round trip airfare to and from Seattle to Philadelphia, lodging, transportation, and meals.

We are truly thankful for all of the thoughts and prayers that you all have been showering over her and our family during this great hardship we are enduring at this time. We realize that many of us are going through difficult times, and we appreciate any donations none are too small. For those who have been praying for us, please continue, and for those who are just hearing her story, please keep us lifted in prayer!