At the June meeting of the Louisa County Ruritan club, the club learned about a local girl in need.
Peyton, a four-year old girl living in the Ruritan Rapidan District area has had many medical issues since birth. These include a VSD and PFO (holes in her heart, both spontaneously closed), prenatal stroke (due to a placental abruption), mild cerebral palsy (right sided hemiparesis), sacral lipoma, previous tethered spinal cord (laminectomy was performed) compound heterozyougs MTHFR, neurogenic bladder with retention and dyssenergia (urethral dilation helped after many failed attempts at cathing her), connective tissue disorder (EDS), and lastly an undiagnosed metabolic syndrome.
Peyton’s parents and doctors have been trying to solve the reason of a sudden onset (August 2013) of bilateral leg pain, numbness, completely absent reflexes above and below the waist, and a severe increase in her pain based on physical activity. She no longer has any sensation on the bottoms of her feet and she got a wheelchair in March for long distances. She has good days and bad days.
Peyton has seen many doctors this last year and had many tests and procedures. When her family took her to Michigan they were told that her spinal cord is attached to scar tissue from her first surgery and that is attached to her tumor, which is called a lipoma. The surgeon in Michigan is willing to be proactive with her surgery and not only de-tether her, but remove as much of her tumor as possible, since it has many nerves in it.
She will also have a muscle biopsy done at the same time, because her neuromuscular docs believe she has a metabolic disorder. On ultrasound her muscles are all abnormal and this could also be the cause of some of her reflex issues. It’s hard to tell right now which are overlapping.
That is leading the family out of state, where they will incur travel, lodging and additional insurance expenses. They just want Peyton to receive the best treatment possible. In Virginia she has been to VCU, UVA, Children’s National, INOVA and the family has contacted multiple other out of state facilities (Shriner’s, etc). This hospital and doctor in Michigan by far have the most to offer her with their vast knowledge of these types of spinal disorders as well as their ability to be as proactive as possible to stop this from happening again.
Peyton has spent so much of her life in doctor’s offices, hospitals, having blood work done, tests, and other procedures. The family is so hopeful that this surgery will help her regain back some of what she has lost this last year physically as well as hopefully find the answer to her metabolic disorder. This could be a condition that is treatable or terminal and the sooner we know the better. Peyton is such a sweet, kind, caring and brave little girl. The family knows she is going to do amazing things one day and they will do everything possible to ensure that.
Any help is greatly appreciated, whether praying, monetary or sharing of Peyton’s story. Thank you so much for your support.
There is a website set up for people to use to donate money to help cover Peyton Daniel’s expenses. To access it, click on the link in the previous sentence.
The Louisa County Ruritan Club has agreed to donate $1,000 towards this worthy cause. The cause was discussed at the Zones 2 & 3 Dinner Meeting held on 6/25/14. The Rapidan District Cabinet will take up the subject at the July meeting to discuss whether the District Cabinet can assist in any way. All Ruritan clubs are being encouraged to consider helping this little girl and her family.
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