Ayla's Journey

Ayla Jane Fisher, our first-born daughter and the love of our life, was born into great challenges. Although the cause is yet unknown, it is strongly believed by doctors that she suffered a stroke in utero. She spent the first two weeks of her life in the Neonatal Intensive Care Unit, with machines and tubes breathing and eating for her. Doctors told us she may never breathe or eat on her own, and the chances of her surviving and coming home with us were slim. However, at eight days old, Ayla was able to breathe and eat on her own. At nine days, the tubes came out and she opened her eyes and smiled at us. At ten days old, we took our beautiful little Ayla home. She proved to us the power of hope, the importance of love, and her undeniable ability to overcome enormous adversity.

Ayla was diagnosed with Global Cerebral Ischemia with a likely diagnosis of Quadrapelegic Cerebral Palsy in the days to come. She requires constant care and attention. We have seen countless specialists and therapists, both public and private, in Ontario and abroad. Ayla goes to physical and occupational therapy every week, as well as osteopath and Feldenkrais practitioners regularly. She gives her every effort with all of these and has been making very promising improvements. As you can imagine, the costs of all these special therapies, supplies, and equipment are overwhelming.

As Ayla’s two-year birthday nears, we are hoping to give her a series of cutting-edge, breakthrough treatments that have been proven to aid dramatically in the management of CP when administered at a young age. With all of these treatments, time is absolutely of the essence. The sooner and younger Ayla can have them, the greater her chances of a better life.

We are reaching out to our family, friends, neighbours, and fellow man, for any help at all to support Ayla in this crucial upcoming year of her life. The treatments we are looking to fundraise for are:

1. Stem cell therapy

2. SPML surgery

3. Physiotherapy intensive

4. Anat Baniel intensive

These treatments, unfortunately, are not covered by OHIP and are quite costly. We have done an exhaustive amount of research on them, and we believe in our hearts that these treatments if done in the near future, will greatly improve Ayla’s quality of life.

To help subsidize the costs of these treatments we are hoping to raise $75,000. Please help us overcome this overwhelming financial challenge, so that Ayla may continue to inspire and amaze us all. We are also blessed to have an amazing individual (who prefers to remain anonymous) that has offered to match all funds raised up to $10,000.

For more detailed information on the treatments we are hoping to get, please read on:

Stem Cell Therapy at Duke University

On St. Patrick’s Day we welcomed Ayla’s younger sister Emma to the world. Due to Ayla’s health issues, Emma qualified for the CP Sibling donor Program that is generously offered by Insception Lifebank. They offered us free umbilical cord banking for Emma in the hopes that Ayla would one day be able to benefit from Emma’s stem cells. Ayla and Emma are a perfect stem cell match (there is only a 25% chance of siblings being a perfect match)! This past week we learned that Ayla was approved for stem cell therapy at Duke University, using sibling cord blood to help lessen the symptoms of CP. Duke has found that an infusion of cells from a child’s own umbilical cord blood (or closely matched sibling donor) appears to improve brain connectivity and motor function in children with spastic cerebral palsy. Since 2017, Duke’s Expanded Access Program (EAP) has enabled hundreds of families who have stored their children’s cord blood to take advantage of investigational therapies offered at the Marcus Center for Cellular Cures at Duke University. Ayla has passed the medical review and we are currently waiting on her treatment date, which we hope will be within the next 6 months. You can read more about Duke’s research here: https://corporate.dukehealth.org/news/umbilical-cord-blood-improves-motor-skills-some-children-cerebral-palsy

SPML Surgery

We recently learned that Ayla’s left hip is in danger of not developing properly, and if

immediate intervention is not taken she may require major hip surgery down the line. Unfortunately, there are few preventative options offered by the Canadian medical system. We have been in touch with a well-respected orthopedic surgeon in New Jersey, Dr. Nuzzo, who has pioneered non-invasive surgeries to help children and adults with CP (these are not yet available in Canada). Dr. Nuzzo believes Ayla needs SPML (selective percutaneous myofascial lengthening) and ethyl alcohol blocks to help reduce the spasticity and tone in her legs, allowing her hips to develop properly, and hopefully aid in her overall motor development. Dr. Nuzzo developed SPML over 30 years ago and has successfully performed it on thousands of patients, many of whom would have never walked without it. At this point in time, only a handful of doctors in the world are trained on SPML surgery. This is a surgery for the treatment of the spasticity of tight tendons that are found in children with cerebral palsy. Dr. Nuzzo will also administer ethyl alcohol blocks during the surgery which will help reduce Ayla’s tone. You can read more about these procedures here: https://spml.eu

Anat Baniel Intensive

Following stem cell therapy at Duke University, our hope is to take Ayla to the Anat

Baniel Center in California for an intensive which will help with her motor and cognitive development. Anat Baniel is one of the world leaders in childhood motor development. The Anat Baniel Method uses principles of neuroplasticity to help the brain create new connections and new patterns that dramatically improve physical, cognitive, and emotional performance. Anat Baniel has over 30 years of experience working with children of all ages and a variety of conditions.

S.M.I.L.E Therapy

Last but not least, we are hoping to raise enough funds for Ayla to complete a 3-week intensive at her homebase therapy clinic, S.M.I.L.E Therapy in Vaughan, which is one of the premiere pediatric physiotherapy clinics in Canada. We were lucky enough to find S.M.I.LE in September 2021, and since Ayla began going for weekly sessions we have noticed the greatest improvement in her overall motor skills thanks to her amazing physiotherapist and occupational therapist. Ayla will have two physiotherapy sessions and one occupational therapy session a day, every day, for 3 weeks. Studies have found that intensives are the best way for children to gain and learn new skills. A study by Bond University found that a 3-week therapy intensive for children with neurological disorders lead to a 176% increase in physical function and a greater likeliness of meeting therapeutic goals. Ayla has completed a few shorter intensives at S.M.I.LE in the past however this would be her longest intensive.