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Lindsey Shannon hasn't added a story.
Hello, welcome to our Super E page, my name is Lindsey and I am Ethan's Auntie. I want to share Ethan's story so that, together, we can raise funds for Ethan's necessary medical equipment and ongoing medical/therapy expenses due to his undiagnosed Congenital Myopathy. I am heading this campaign to help Ethan’s Mommy and Daddy, Scott & May, to alleviate some of the financial stress affecting them so they can focus entirely on their amazing little boy. When our family began this journey with E, we had no idea the expenses they would face and they have never once asked for help.
There have been many unexpected expenses associated with Ethan's complex medical issues. Due to the fact that Ethan needs 24/7 care, it has not been an option for his mommy to return to work, and this will be the case for the foreseeable future. His parents work hard to share his accomplishments and strengths but the reality is; every day is a battle to keep him healthy and out of the hospital.
His parents and home care nurses work tirelessly to prevent acute life threatening events. Scott and May continue to exhaust every avenue they can find to fund Ethan's equipment, supplies and care but are realizing that the future will hold many expenses that they just can’t manage on their own.
They are the two most amazing people and together with Super E they form a tight, loving, dedicated family unit. Since birth, Super E’s life has been filled with complex health issues that have challenged both him and his Mommy and Daddy. He has faced more struggles in his young life than many of us will in our lifetime and we are all so proud and amazed by him.
His adorable little mouth might not yet be able to hold a full smile, but you can see it in his eyes as he truly lights up the room when you are in his presence! Please help us to help them. We are also offering perks as a thank you for your donation, take a look through them. They will be shipped to you at the end of the campaign, don't forget your address! (limited to Canada for shipping reasons)
How E's story began
Ethan's Mom had an uneventful and healthy pregnancy which culminated in a traumatic delivery. Their whole world turned upside down, when 7 days after his birth, their sweet baby boy was admitted into the pediatric unit at Victoria General Hospital suffering from low weight gain, and general weakness. They went from proud new parents to anxiously watching over Ethan while medical staff poked and prodded, administering test after test, trying to find out why he was struggling.
Within a few days Ethan was being tube fed, had been transferred to the PICU, and had suffered a lung collapse which resulted in him being attached to a ventilator. It was determined that Ethan needed to be transferred to Vancouver Children’s Hospital for more intensive care and testing. He was flown via air ambulance to the PICU and the testing continued. Scott and May spent the first 2 months of parenthood in Vancouver with Ethan in the PICU, on a journey filled with both heartbreak and rewarding love for all of them.
A little about Super E Now...
“Beep…Beep…Beep…” this is the sound that Ethan, or “Super E” as we have come to call our little soldier, hears every night while he sleeps, and probably will be hearing for the next few years of his life. Ethan’s oxygen levels must be monitored by a pulse oximeter which is attached to his toe while he sleeping. Every night Ethan is hooked up to 3 or more different pieces of equipment to support his health and to alert Ethan’s daddy and mommy, Scott and May, or his night nurse, of any life threatening incidents concerning his breathing and alarms for his continuous feeds. The hum of his BiPap machine has become the familiar sound that lulls the family to sleep every night.
(above Ethan's BiPap and his nightly set up and below Ethan's showing his feeding tube)
While other 1.5 year olds have met their crawling and walking milestone, Ethan is still working hard on sitting unassisted due to his low muscle tone and he still needs the support of a newborn when you pick him up,. Although Ethan is not meeting these standard milestones,he is defining his own milestones and mapping his own journey.
Ethan has made great strides in a short time with his core strength and every day he is managing to sit for longer periods and holding his head up with less and less support.
Speech is also a challenge, due to the low muscle tone, but Ethan is learning to communicate using sign language, as his hands develop more strength.
All these accomplishments are a result of many hours of hard work from Ethan along with his therapists and caregivers who come to their home regularly and are further reinforced by Scott and May's dedication to practicing and encouraging Ethan over and over again.
Why does he need funding?
Because of his current physical limitations, he requires much supportive equipment, devices and therapies. Most of these items and services are only partially covered by government funding and cost many thousands of dollars. Many of his medical supplies need to be purchased directly out of pocket and there is no reimbursement available for these items.
So that Ethan can continue to physically develop, he requires many pieces of specialized, supportive, modified gear such as specialized seating. Ethan also requires a stander to assist him standing upright and aid him in weight bearing on his legs.
He is very fortunate to currently have a couple of these items at home on a trial basis, but, they are only loaner items from his therapy center, Queen Alexandra Centre for Children's Health. These loaners will need to be returned very soon so other local families can trial them and Ethan will need his own set to continue supporting his development. As you can imagine, the cost for these items is astronomical. The cost for the stander and adaptive seating system alone will be almost $10,000 and only about $3,200 of that will be covered. Adaptive equipment is shockingly expensive.
And the list goes on for future needs: Stander, Adaptive Seating System, Early Activity System Mat, Power Wheelchair, Manual Wheelchair, Walker and Adaptation of vehicle to accommodate wheelchair.
The list continues to grow as time goes on and his family was not prepared for these extra expenses. There are also therapy treatments offered only in the United States that may aid in his ability to swallow. These treatments will have to be paid for entirely by the family and will cost several thousands of dollars to cover travel and session costs.
They quickly have become accustomed to all the equipment and many daily medical routines as their norm and just don't realize how many people that they have inspired and impacted on this amazing journey they are on.
We hope you are one of the many who have been inspired by them and by Super E and we hope you are able to show your support to them. This is where your donations would be greatly appreciated.
Thank you for taking the time to read about our special baby panda. I cannot begin to express how much this little boy means to our family and friends. He has made a huge impact on our lives the moment he entered this world and has continued to do so on a daily basis. He truly is our hero!
If you would like to know more about Ethan, check out his blog here:
http://posthope.org/super-e/journal
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