Marlowe is 9 years old and in the 3rd grade
She would like me to tell you she is smart
She loves to read and be outside with the wind and sun in her face
Marlowe enjoys the mountains and the beach
She is adventurous and loves activities like snowboarding in a sit ski
her adaptive trike
going fast on her ATV
She loves going on vacation and wants to be a world traveler when she grows up
Through donations we will be providing physical therapy for this sweet girl Marlowe. She has not received physical therapy for over a year. Marlowe was chosen by Mountain Moments to receive services due to: her long term diagnosis, insurance restrictions, logistics with being able to receive hands on care, and high risk of complications if she were to get COVID 19.
Our Goal with Physical Therapy
Help slow the progression of the curve in her spine due to scoliosis
Improve her tolerance and ability for upright posture
Facilitate weight bearing to improve bone density and decrease risk for fractures
Increase range of motion to improve ability to sit, stand, and transition with more fluidity of movement
And of course smile while we are making her work hard
Marlowe has Rett Syndrome. This is a neurological disorder caused by a spontaneous genetic mutation. Rett Syndrome effects mainly girls and the severity and symptoms differ in each girl. Her list of symptoms is long and challenge her daily: it's like having Parkinson's, Epilepsy, Autism and Anxiety all in one body. Some refer to the girls as "being trapped in their bodies."
Marlowe was diagnosed when she was almost 4 years old. We first saw a plateau of milestones when she was 8 months old but she still seemed like a typical, adorable baby. She never learned to crawl, walk, or pull to stand. She sat by herself but couldn't get there on her own. She would roll to where she wanted to go. She had about 15- 20 words, she ate and fed herself. She was happy!
Now, it has been a long road of ups and downs. She has a feeding tube that she is hooked up to about 20 hours a day which is her sole source of nutrition. A wheelchair that is her legs and gets her to where she wants to go. A standing frame so she can bear weight to help make her bones stronger (she has had 3 femur fractures) Marlowe has an eye gaze computer that tracks/ scans her eyes so she can communicate since she is 100% non-verbal. Her scoliosis is almost 90 degrees and we are facing corrective surgery soon. Her days consist of online school, therapy, symptom and pain management.. and also watching her younger siblings run around the house.
We fit in as much fun and excitement as we can because after all, she is just a 9 year old girl who wants to do fun and exciting things.
We Love Our Donors
Mountain Moments would not be able to provide services for families like Marlowe's if it wasn't for generous support of our donors. Your donations go a long way and are greatly appreciated. We sincerely thank you. If you know of other's who would be interested in hearing Marlowe's story or who could use support for the services we offer please feel free to share her story.