Meet Our Evie
Smart. Strong. Sweet. Sassy. Sensitive. Spirited.
These are just a few words that describe Evelyn. She is a typical 3.5 year old who loves music, dancing, being a big sister, going on adventures, making pancakes, and being a social butterfly. She also happens to have Cerebral Palsy (CP) which she will live with the rest of her life.
Cerebral Palsy is the number one physical disability in children and is often a result of a brain injury around the time of birth. Evelyn was born 6 weeks premature, and started her life in the Neonatal Intensive Care Unit (NICU).
After some tense weeks, in true Evelyn fashion she ripped out her feeding tube, started to eat on her own, gained strength and was able to leave the hospital. She was a happy, chubby baby and we had no worries; until we noticed Evelyn was not reaching her milestones. When she was 10 months old she was not moving around, and though she could sit, she sat with straight, rigid legs. After speaking with her doctor, she started physiotherapy at 13 months. We didn’t understand why she was not walking, pulling up to stand, or transitioning to sit. Her beautiful blue eyes also crossed more often than not. We continued therapy for months before CP was first mentioned at 19 months. When she was 22 months old she had surgery on both eyes to help their alignment, and at 2.5 years CP was finally confirmed through an MRI.
Evelyn has Spastic Diplegia, meaning both of her legs are affected by spasticity. Messages from damaged parts of her brain are causing her muscles to continuously contract, which is spasticity. She’s more affected in her left leg, or as she refers to it, her “tricky” leg. Evelyn’s brain injury will not get worse, however her spasticity will ruin her body. Every time she grows it’s a battle to keep her tight spastic muscles stretched enough to keep up with her growing bones, and hopefully prevent deformities and contractures for as long as possible.
Over the last several years Evelyn has spent countless hours in physio and other therapies, visiting various medical professionals, getting fitted for orthotics and having painful Botox injections (to weaken the spastic muscles). She also still wears an eye patch for a few hours a day and may need an additional corrective surgery on her eyes. Despite our best efforts, she falls often and struggles with balance and coordination. Evelyn is unable to stand flat footed with ease, and never really reaches a state of steady balance. She walks up on her toes, and doing things like running, jumping and climbing are slow and difficult for her. As she’s gotten older and started to realise her body works differently than others, her frustration has grown. When playing with friends she is often heard saying “Wait for me!” She herself says she “wobbles” and her poor knees are often swollen from her falls.
People with CP age early, live with chronic pain and develop joint deformities over time. Even children considered “mild” like Evelyn will see their mobility decline in their teens, 20s or 30s.
Like all parents our daughters’ future is constantly on our minds, and although we knew decline was inevitable, grown up CP issues seemed far away when dealing with the typical adventures and attitude of the early years. After her summer growth spurt and the resulting tightness however, the abuse her body is taking no longer seems like a problem we have the luxury of time to deal with. The increasing limits to her mobility, and her realisation of them, are everyday reminders of her current and future struggles.
After a year of research, talking to other CP families and adults with CP, we learned about a surgery that could give Evelyn a brighter future! It is called Selective Dorsal Rhizotomy (SDR) and is performed by the world renowned neurosurgeon Dr. T.S. Park at the St. Louis Children’s Hospital in St Louis, Missouri. He has operated on over 3500+ patients over the last 25+ years. After submitting an application, spine and hip x-rays, MRI scans and video,
Evelyn was APPROVED and considered an excellent candidate for SDR.
For more information on SDR please click here.
His predictions include:
· Her spasticity will be permanently reduced
· Her sitting and standing postures will improve
· Her transitions will be easier and faster
· She’ll walk independently in all environments with improved balance and endurance
· She’ll be able to participate in recreational sport activities
Why We Need Your Help
SDR is not available in Ontario. While it is offered in Vancouver and Montreal, we have learned the techniques are different, more invasive, performed infrequently, and would place more limits on Evelyn’s recovery. This is why we believe Evelyn's best chance is in St. Louis. We feel Dr. Park’s less invasive technique and his expertise as the world leader in SDR is Evelyn’s best opportuniy for a good outcome. While the surgery has the potential to greatly improve Evelyn’s life, the journey is a long and expensive one. Dr. Park will remove part of Evelyn's vertebrae, and will sever misfiring nerves in her spinal column. Evelyn’s nervous system will need to adapt, and she’ll need at least a full year of intensive rehabilitation.
We are actively applying for OHIP coverage, however at this time we don’t know if she will be approved, and with damage due to spasticity ever growing can’t afford to wait. Even with OHIP approval, only the surgical costs of SDR are covered. Any associated orthopedic surgery will not be covered, nor would the cost of in hospital rehabilitation in St. Louis. OHIP will also not cover the required at home rehabilitation once we return to Ontario, however that will be partially covered by our work benefits.
Total costs can top $150,000. This amount includes the cost of the surgery, equipment for the home, physiotherapy both before and after the surgery, accommodation in St. Louis and travel costs. We are hoping to raise $120,000 to help pay for the surgery.
The anticipated costs of this process are:
How You Can Help
1) Share Evelyn’s Journey
2) Contribute Funds
a) Donate to Evelyn’s GoFundMe page
b) E-transfer to [email redacted]
For those who prefer to avoid credit card or other fees
(will be added as an offline donation)
c) Charitable tax receipt? Does your company offer a contribution matching program?
Donate to Evelyn through Handi-Care International (HCI) for a tax receipt.
(will be added as an offline donation)
Reg. Charity Number: #BN 889046397RR0001
Please clearly indicate your donation is to be given to Evelyn Scott.
To donate through HCI please click here.
Please click here for more information on HCI donations
3) Donate an Item
We are planning some fundraising events. If you have an item you wish to donate to be used in our fundraising initiatives, please contact [email redacted]
Thank you for taking the time to read Evelyn's story about her life changing journey!
For More Information please visit KeepingUpwithEvie.com
Or join our Facebook Group https://www.facebook.com/groups/KeepingUpWithEvie/
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