A little history on Carlie (in a tiny nutshell): when she was 6 months old, Carlie was diagnosed with Hemophagocytic lymphohistiocytosis (HLH) which is a “life-threatening, hyper-inflammatory disorder affecting both newborns and adults alike. The disease is characterized by dysregulated immune activity resulting in malignant inflammation and multi-organ failure”. This required a bone marrow transplant. Unlike cancer, this process for this disease only took a few months for which we were so very thankful. Fast forward 2 years of fantastic recovery and this smart, funny, happy girl was sailing through life. Around the 2 1/2 year mark we noticed that Carlie’s speech was becoming a little slurred and her gait had changed some. Several MRI’s and tests later, it was determined that Carlie had suffered some sort of Demyelinating disorder. This left her unable to speak or sign and with developmental and physical delays. Now fast forward (again) to today…
A note from Mom:
Carlie is my little (big) daredevil. She may be 19 years old now, but will always be like a little kid who loves big waves in the ocean, fast roller coasters, hugs from Micky and Minnie, and being on top of Stone Mountain. These are things we try to let her experience as often as possible but are things we can’t do every day.
Due to her physical and developmental issues, Carlie will never be able to ride a bicycle on her own so I am trying to raise funds to purchase an adaptive bike for her. We had one before and got at least 15 years of use out of it, but Carlie has outgrown it. I think this is something she really misses. She watches her cousins ride bikes and points to the bike and then to herself to let me know she wants to ride. It is hard for this mama to not be able to let my girl enjoy some of the simple things in life. I would love to be able to take her for a ride with the rest of the family again!
The money raised through Carlie’s page will go to HHL and will be tracked in her name to be used for any special needs that may arise in her future. Please share this page with friends and family. The work that this group does impacts so many lives.
Carlie has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
