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HELP ATHENA 2 WALK

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Thank you everyone! We couldn't have done this without all of your support and generosity. We are truly grateful.

Sincerely,
Athena's Family (Fiona, Jim, Phoenix, & Athena)


Help Athena 2 Walk


Please help us give Athena the opportunity to walk independently.

We Need Your Help:

We are trying to raise $120,000 to help pay for a life-changing surgery - Selective Dorsal Rhizotomy (SDR), that will be performed by Dr. TS Park, at St. Louis Children’s Hospital. Athena is currently on the waitlist for June 2017. Otherwise, the next possible date for her surgery will be in October 2017. This surgery will help improve Athena’s life and allow her to live it to the fullest, by giving her the chance to walk independently.

About Athena:

My daughter, Athena, was born at 31 weeks. She was premature at 4.37 lbs (1980 g) and was diagnosed with periventricular leukomalacia (PVL). PVL is a condition in which decreased blood flow causes damage to brain tissue. The damaged brain tissue affects the nerve fibers, that control body movement. In general, PVL leads to motor disorders, the most common of which is cerebral palsy (CP), which is how it presents in Athena.

Athena, has cerebral palsy - spastic triplegia. As written by OFCP, “spastic cerebral palsy is the most common type and is caused by injury to the motor cortex. Spastic muscles are tight and stiff, which limits ease of movement. Usually muscles work in pairs: when one group contracts, the other group relaxes to allow free movement in the desired direction. Spastic muscles become active together and block effective movement. This muscular “tug-of-war” is called co-contraction. Spasticity may be very mild and affect only a few movements, or it can affect the whole body.” http://ofcp.ca/wp-content/uploads/2016/05/Guide-to-CP-2015.pdf. For Athena, cerebral palsy has affected both of her legs and one arm.

Just recently, we learned about SDR. Based on our research and from testimonials, we believe that SDR in St. Louis is the best choice for Athena. The technique that is used in St. Louis is less invasive than other SDR surgeries. It will help to permanently reduce the spasticity in Athena’s body and will allow her to have more ease of movement. Most importantly, it will give Athena the opportunity to walk independently.

Athena is 9 years old and starts every day with a big and beautiful smile. Despite her gross and fine-motor challenges, she still manages to keep her big brother busy. Currently, in order for her to be mobile and to accomplish even the simplest of tasks independently, she must use either a walker or a wheelchair.

Athena has gone through many years of physiotherapy, occupational therapy, painful Botox injections, bracing, and serial casting. Through it all, Athena has shown courage, strength, and determination. Her zest for life affects all of those around her and she is an inspiration to many.

Our goal of raising $120,000 will help us with the cost of the SDR surgery, tendon lengthening surgery (PERCS), post-operative physical therapy, travel and housing costs.  

Please help us reach our goal of $120,000. It would mean so much to us, especially Athena, to be given the opportunity to be able to walk independently.

What Athena Hopes For:

Athena wants to be more active and loves being a part of the action.  She enjoys swimming, singing in the school choir, attending summer camps, baking gingerbread cookies, picking fresh strawberries & apples, and helping in the kitchen, to name a few. She tries her best to be like everyone else, but even she realizes her limitations because of CP. Often times, she is left to simply watch from the sidelines. She very much wants for this surgery to happen. She hopes to be able to walk independently, move with ease, and generally just be able to regularly participate in daily activities with family and friends.

Improvements for Athena After Surgery:

According to Dr. TS Park at St. Louis Children’s Hospital, Athena will benefit greatly from selective dorsal rhizotomy. This surgery is expected to improve the following:

- her spasticity will be permanently reduced
- her sitting and standing postures will improve
- her transitions between postures will be easier and faster
- her balance and level of comfort will improve
- she will have the potential to ambulate independently indoors and use canes/crutches outdoors

About Athena’s Family:

We try to give back to this community, by organizing a motorcycle charity ride each summer, to raise funds for The Ontario Federation for Cerebral Palsy -  assistive devices program. We also help to raise awareness about those living with cerebral palsy and promote the OFCP’s Helpcycle program, that provides free home pick up of much needed items.

Now it is our turn to ask for your help. We need all of the assistance and support that we can get, to make Athena’s wish to walk a reality, by raising $120,000. Please help us on our journey to making this happen for Athena. Help spread the word. Thank  you.

Sincerely,
Athena’s Family
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Facebook:
Jim-Fiona Weigniteurlife
3rd Annual Charity Motorcycle Ride for Cerebral Palsy

Ontario Federation for Cerebral Palsy (OFCP):
https://www.ofcp.ca/

St. Louis Children’s Hospital & SDR Surgery:
http://www.stlouischildrens.org/sites/default/files/services/cerebral_spasticity/files/SDRbrochure_final.pdf

Global News:
http://globalnews.ca/news/2170390/families-fighting-for-childrens-surgery-rejected-by-ohip/

CBC News:
http://www.cbc.ca/news/canada/toronto/parents-ask-why-it-s-so-tough-to-get-ohip-coverage-for-life-changing-surgery-1.3976807

http://www.cbc.ca/news/canada/toronto/kids-needing-ohip-funding-for-surgery-tangled-in-catchment-area-red-tape-1.3983945

Organizer

Fiona Santos
Organizer
Richmond Hill, ON

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