Prestyn’s medical journey

Prestyn was diagnosed with NF-1 in June of this year. She has begun her long chemo journey that will last for approximately a year and a half. Her family lives here in Dothan and must travel to Birmingham weekly for treatments. You can imagine the financial strain this can cause. Along with chemo treatments weekly, her family is coming up with a plan to be able to keep Prestyn home and out of daycare away from germs while they continue to work. If you feel led, every donation will help this family navigate through the difficult days ahead and help them remain as strong as possible for sweet Prestyn!

A note from Prestyn’s parents:

Prestyn has been diagnosed with Neurofibromatosis, or NF-1. This condition can cause the growth of tumors along the nerve paths anywhere in the body. We had been monitoring indicating marks, known as cafe au lait spots, on her abdomen since she was born. At her three year old check up, the number of new developing cafe au lait spots became plentiful enough to merit a workup for NF. We had referrals out to specialist in ophthalmology and neurology at UAB.

The week before her ophthalmology appointment, Prestyn began complaining of pain in the right eye, followed by protrusion of the eye, swelling in her temple area and drooping of her eyelid. Within a few days of these presenting symptoms, the ophthalmologist confirmed that P did in fact have NF-1 and was able to see an optic nerve glioma during her eye exam. We quickly moved through diagnostic imaging and confirmed with an MRI that the tumor on her optic nerve was extensive and would require treatment to prevent growth and further vision loss. Multiple other lesions were seen on her scans but are secondary to the optic nerve glioma.

The day after receiving the imaging results, we met with the pediatric neuro-oncologist at Children’s Hospital and identified a treatment plan for Prestyn. On Tuesday, June 13th she had her port placed and received her first chemotherapy treatment in the outpatient setting on Wednesday, June 14th.

All of this has come to us very quickly with very little time to process this as parents. We do know that the treatments will be weekly for the better part of a year and a half. All will be done in Birmingham at Children’s Hospital and we are optimistic that we will remain outpatient for treatments throughout her plan. Prestyn will continue to receive MRI’s every three months to further monitor the glioma and other areas of concern.

As our village, we ask that you continue to pray for our little girl. To know Prestyn is to know that she is a feisty thing in a tiny package. We are working to keep things as normal as we can for our girl during this process but we do understand that some change will be inevitable. Pray for our family as we work to balance what is in her best interest with the sense of normalcy. We thank you for your love and support!