A Mother's plea, a daughter's faith and a cause worth helping.
Six year old Lilly Grace boldly takes on the road ahead.
This family needs help and while alone it may seem impossible, I know that when we each give a little or a lot, it not only eases the financial burden, but gives this family strengthening hope! We want to help Lilly Grace through her journey and we hope that you would like to help her too. Please read her story below. Thank You!
My name is Airicia Holcomb and I am the mother of a wonderful 6-year-old daughter named Lilly Grace. Last year while in Preschool we began to see our sweet Lilly struggle with reading letters and numbers along with motor issues holding her pencil. After looking into classroom testing for disabilities we were asked to see a local eye doctor for her eyes. It was during this visit that we first realized our little one had something more serious wrong.
Our local eye doctor sent us to Cleveland Clinic to see the Genomic Medicine Institute. Here we were introduced to genetic testing with Dr. Rocio Moran and a new plan for our little girl’s health. After a series of testing it was reported that Lilly has a mutation in FBN1 and TGFBR1 and 2. This Mutation is reported as Marfan syndrome a connective tissue disorder associated with skeletal features, cardiac aortic dilation and severe lens dislocation. This condition has a wide range spectrum that involves 2 or more organ systems.
For Lilly the major diagnosis she is struggling with is her lens dislocation and vision loss. Her screenings for aortic dilation and valve prolapse dimensions look good and seem to be stable and have a normal biventricular size. There is evidence of skeletal findings of rapid growth and wide wingspan but all is within a stable range. For this reason she is still able to participate in most school functions without restriction. This is truly a blessing for an energetic 6 year old who wants to run and play like the other children. It is possible within the next few years that a restriction on activity may become necessary but for now we feel truly blessed.
As for her vision we are working daily to help her succeed in a world that is often hard to see clearly. Her teachers and school aides work closely with her to help her have success in school. We met with a reading specialist this week and we are looking into purchasing matching textbooks in a large print for her in her classroom. Along with these textbooks we need to provide flash cards and additional learning tools such as a flat abacus for math and desk visuals to help her with daily lessons. We are passionate about keeping her in a regular classroom with mainstream students. She is very bright and scored 2 years above her age on an Otis Lenon abilities test, so we know she is able to do the work if she can understand the material. Her vision changes often and requires new lenses every 2-5 months to keep up with her lens displacement. She is an amazing young girl and is not afraid to fall and then bounce back up! We know she will use this difference to show God’s hand in her life and how he can bring healing in the storm.
My husband and I serve in full time Ministry in Green, Ohio and had the pleasure of praying with Lilly Grace 2 months ago to receive Christ as her personal savior. I have no greater joy then to know my children are walking with the Lord.
With this heart change she no longer seems afraid of her journey ahead. She now walks in to face each doctors appointment with a new attitude that -this will not beat me because God is on my side and he is bigger than this syndrome!
I pray you will consider Lilly Grace for your ministry. Her current needs are for replacement lenses every 3-6 months along with a possible new vision insurance plan to cover her growing needs. We have many large medical bills outside of our insurance coverage for her specialists and genetics testing. Her school is open to helping with her vision issues and would allow her to use large print books but we may have to purchase those throughout the coming years. We have found a teacher who works with blind children and since she is in the legally blind category he has said he could work with her on a private pay basis. We are working with Cleveland Clinic to find her additional help.
Thank you for taking the time to read and consider helping our sweet girl. She often sees God’s plan clearer than a person with PERFECT vision! Wow… to be more like our precious Lilly Grace!
Blessing to you!
The Holcomb Family
Adam, Airicia, Gabe and Lilly Grace Holcomb