Dylan's Life Changing Journey

Please help 4 year old Dylan Tutolo get life changing surgery!

We are trying to raise $140,000 to help pay for a life-changing surgery that will help Dylan cope with living with CP.

Meet Dylan!

He is a typical 4 year old boy who loves to play with his toys especially his battery operated 4 wheeler, he absolutely adores going to Preschool and playing with his friends, loves his little brother Tyler so much, and of course loves spending time at our trailer in the summer with all his Cousins. Dylan has the type of personality and sweetness that makes pretty much anyone fall in love with him the moment they meet him.

Dylan was born premature at 34 weeks with Spastic Diplegia Cerebral Palsy due to complications with the placenta. With those complications, Dylan was not getting enough oxygen and nutrients which caused damage to his brain that impacts muscle tone, impairs muscle coordination in both of his legs impacting the left side more so then the right. Also, at 4 months old Dylan was diagnosed with bilaterial strabismus which caused his eyes to cross inwards. He required surgery for this at the age of one and then again at the age of three. 

 When Dylan was born he was rushed to the NICU and hooked up to CPAP and was on antibiotics and other strong medications.  
When he was supposed to be sitting up, crawling, pulling himself up we noticed that he struggled quite a bit. He would figure out different ways to achieve it even if it was a little later then most children his age.  After 2nd and 3rd opinions at the age of two Dylan was finally sent for an MRI on his spine and brain, the results came in and revealed that he had damage in his brain that resulted in him having cerebral palsy.

Dylan has been through so much in his four years not once wanting to give up. Along side his eye surgeries Dylan has had Botox injections x3 to try and help relax the muscles in his legs. He currently attends Physio Therapy, Occupational Therapy, Speech Therapy, and Conductive Education twice a week. 

Why We Need Your Help
Dylan is an excellent canidate for Single Level Selective Dorsal Rhizotomy (SDR) surgery and has been accepted by Dr. T.S. Park at St. Louis Children's Hospital in Fall 2017.

A little information on Selective Dorsal Rhizotomy. SDR is a major surgery where they operate on the nerves at the tip of the spinal cord, the nerves are tested and the ones that are damaged and causing the spasticity are cut, the outcome permentally reduces the spasticity in the legs . Dr. Park is a Paediatric Neurosurgeon who has perfected this surgery as a single level SDR operation which is less invasive then multilevel SDR which is the type that they offer here in Canada. Dr. Park has performed almost 4000 successful SDR surgeries to date with no serious complications in any cases. He has dedicated his career to performing this surgery and has been doing it for over 30 years.

We are currently in the process of trying to get OHIP to help cover the cost of the surgery. In order to do so we are on a waiting list to see a Paediatric Neurosurgeon who has experience with SDR here in Onatrio to sign an out of country form. Even if OHIP will help, they can only cover 30,000.

What We Need:
Total costs are over $140,000. We're trying to raise funds to help pay for: The  two surgeries SDR & he will also need muscle lengthning surgery , Before and After Physio Therapy,  any equipment needed for the home and accomendations in St. Louis, travel costs and other costs associated with Dylan's journey.

SDR will be absolutely life changing for Dylan! By reducing the spasticity in his legs it will help him learn to use the natural muscles in his legs that he has been unable to use due to the tightness. This will help him stand and walk with better balance and endurance, transition between positions faster and easier, play recreational sports as he gets older. Having the surgery will not only help with all those wonderful things that I have listed above, but will make him feel more comfortable in his own body, with less pain as he grows, help prevent contractures (bone deformities) which have already  begun, and to help prevent multiple orthopaedic surgeries.

There is absolutely nothing that we won't do to try and better our sons quality of life. He deserves all the best and we will stop at nothing!
We are extremely grateful to Dr. Park for giving Dylan this amazing opportunity and believing in him!
Dr. Park's predictions for Dylan are so very exciting to us and we cannot wait to see what his future has in store.

Mike and I are extremely proud of Dylan with everything he does!

we want to thank everyone for following Dylan's Journey, it means more then you will ever know!

 For more information on St. Louis Children's Hospital and SDR.

Global news and CP24  has run stories on trying to help families get the answers they need.



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Tara Tutolo
Halton Hills, ON

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