Help Phoebe Lynn and Family Conquer Chiari Surgery
Donation protected
Hello, family and friends,
Thank you all so much for taking the time to read Phoebe’s story.
As parents, we strive to give our children the best opportunity possible to live long, healthy lives. It is heartbreaking to see your babies go through a rough time. That feeling is magnified exponentially when you worry about your baby's babies.
As I’m sure you all know, our sweet granddaughter Phoebe, who some affectionately refer to as "Princess Warrior Phoebe", has had more than her fair share of struggles throughout her short life. After a troubling sonogram denoting possible heart deformation, our sweet girl was born 3 weeks early and seemingly healthy. Soon after, she was diagnosed with Goltz syndrome, a rare genetic condition characterized by involvement of the skin, skeletal systems, eyes and face. One such side effect from Goltz resulted in Phoebe's left hand having two fingers fused together. One surgery and 6 casts later, Phoebe came out on the other side stronger than ever.
Though Phoebe has not struggled with her cognitive development, doctors started to note a lack of bodily growth, which is common with Goltz Syndrome. It was suggested she might be a candidate for growth hormones, but further testing would be needed to make sure her size was directly being affected by the Goltz and not something else. After many visits to her pediatrician and other doctors, it was discovered that our sweet little warrior suffers from a Chiari malformation. To put it simply, our brains rest in our head, with the cerebellum connecting to the spinal cord via the hole at the base of our skull. In Phoebe's case, the area containing her cerebellum is small, causing the lower part of the brain to descend into the spinal cavity. Along with increased cranial pressure on her brain, Phoebe suffers from vision and growth complications. She has adapted to wearing her glasses and has a pair to match every outfit! And though she is small, she can hold her own with big brother Liam.
Phoebe is scheduled for surgery to fix the malformation this month. She will obviously need to spend additional time in the hospital so that doctors can monitor her condition. Mom and Dad want to be with her throughout this process but due to Covid-19, there will be restrictions. Jason and Kelsie have had a rough go of things lately, between mentally preparing for surgery and losing their car in a wreck that wasn’t their fault. Mom and Dad are now facing the challenges of one vehicle, limited ability to work, being with Phoebe at the hospital, and making sure three-year-old brother Liam is taken care of as well. There are many family members willing to help, of course, but the current COVID situation restricts others ability to help due to quarantine.
We are asking for support from our family, friends, and community to help this family care for their Little Lynn’s, and the out-of-pocket medical and personal expenses associated with surgery, recovery, and extended care . If you feel led to donate to this fund, it will be greatly appreciated. We are so thankful to be surrounded by such a loving, supportive community, wanting to see our sweet girl thrive just as much as we do.
From the bottom of our hearts, thank you so much for taking the time to read, donate, or offer prayer. We are grateful beyond measure.
Love,
D. Lynn and Teresa (aka, PopPop and Winnie)
Organizer and beneficiary
D. Lynn Ward
Organizer
Rockwall, TX
Kelsie Lynn
Beneficiary