Judy Lincoln and her son Eli were present tonight as our guests. Judy is Nancy and Dave Morris’ daughter and Eli is their grandson. They live in the Ottawa area. Judy and Eli were joined tonight by Kathryn McBurney [Marketing &Communications Manager] and Andrew Ferris [Development Officer &C.M.N. Program Director], both from The Children’s Hospital Foundation of Manitoba.
Every year, member hospitals identify a remarkable child to serve as their Champion. Together these kids represent the more than 2.3 million children treated in Canadian member hospitals each year. Their stories demonstrate the incredible advances that have been made in child health care in our country, and the personal journey children and their families take to overcome illness or injury. https://childrensmiraclenetwork.ca/the-children/ . Click to see their stories.
Eli was the first to talk tonight. He was chosen to be the Children’s Hospital of Eastern Ontario (CHEO) Champion Child for 2019. He has been through countless diagnostic procedures just to find an actual diagnosis for his condition. Eli is happy to finally have a name for it, benign hereditary chorea.
The family was eligible for exome sequencing which involved taking blood samples from dad, Richard, mom, Judy and Eli and having all 20,000 genes per person sequenced and compared. This led to the diagnosis of a rare condition called benign hereditary chorea or brain-lung-thyroid syndrome which gave Eli a name for his condition. He now has a treatment plan and access to a team of specialists who can help.
Eli has been in T.V. interviews, on a Radiothon for an hour straight. They have done many preparatory video takes, all in support of Children’s Hospital. The big event was to be part of the CHEO fundraising campaign video. Eli is very excited to meet the other C.M.N. Champion kids in Florida when the Covid-19 situation will allow.
Kathryn McBurney advised that the biggest issue this year has got to be being able to get these children out to speaking engagements. The restrictions due to Covid-19 have made the entire program difficult to run. Major fundraising events have had to be cancelled. Even something like a Radiothon gets cancelled. This is because the location has traditionally been in centre court at Polo Park Mall.
This is a national program in the U.S.A. and Canada. Here in Canada there are 13 Hospitals in the Network. The way that the Champion Children get chosen is;
- Uniqueness of story
- Question if they can be active in the foundation activities
- Comfortable speaking to groups/public
Each child will go to 50 to 100 locations in their year as the CMN Champion Child (typical year).
The foundation has a list of major sponsors;
- Walmart
- The Brick
- Air Canada
- DQ
- Lowes
- Costco Canada
Kathryn McBurney son, Logan, was a CMN Champion Child. In 2015 Logan was 10 years old when he was involved in a traffic accident. The vehicle that he was in was hit by a semi. He was in a coma at HSC Children’s Hospital for a long time. Logan had suffered a brain injury in the crash. When he eventually came out of the coma, he had to learn how to swallow, speak and walk. A long road to recovery.
Logan wanted to share with others the great care that he had received and continued to receive at HSC Children’s Hospital. In 2016-2017 he was the HSC Children’s Hospital Champion Child.
The HSC CMN Champion Child is Brady. He was diagnosed as having Type 1 Neurofibromatosis – a genetic disorder that causes tumours to form on nerve tissue. These tumours can develop anywhere in the nervous system, including the brain, spinal cord and nerves.
When Brady was six, a curve in his spine appeared. An MRI detected Brady had a plexiform neurofibroma – which is a larger, more extensive tumour – growing off his spine. Because it was so large, it caused Brady’s spine to bend. This tumour was not removable, so Brady has had three spinal surgeries to implant rods into his back to keep his spine straighter. Just recently the doctors determined that the rods had to be removed. During a recent 12-hour operation, they fused Brady’s thoracic spine. Brady is now 12 years old. He is recovering in hospital right now from the operation and being very well taken care of. The Child Life program is especially important for the children in hospital. Right now, even parental visits have been extremely limited.
Andrew Ferris indicated that it is amazing to hear from past Champion Children. The virus Covid-19 has made for an exceedingly difficult start to 2020. Due to Covid-19 most programs have been cancelled, even Child Life programming in the hospital. There are usually in hospital supports for the children and their parents. The Child Life programming would usually include music, clowns, closed circuit TV, toys, electronics and crafts. This programming is almost 100% funded by community events. The yearly goal is $500,000.00 per year at HSC Children’s Hospital.
The Teddy Bear Picnic was held this year, virtually. There were 7 hours of videos to entertain the children. There was minimal fundraising during this event.
Fundraising is ongoing for a new Heart Centre. The original was built in the 70’s or 80’s.
There was a rush for tablets and smartphones when Covid-19 hit. These enabled the children to contact their families electronically.
Mental Health is a big concern. There were one in five children with difficulties before the pandemic. This is expected to rise significantly.
All third-party events for fundraising have been cancelled.
The annual Gala was cancelled (usually has 1,000 present). The annual golf tournament has been postponed to August 18, 2020 (for now). Still have a concern as to how they will be able to serve dinner to the golf attendees.
HSC Children’s Miracle Network is concerned about the annual Radiothon at PoloPark.
Brady wants to raise $50,000 on his own. He recently did an event, with the help of his two sisters, and raised $5,000!
Judy Lincoln listed off a huge list of specialist categories that they have visited with or had treatment by, for Eli. She also indicated that in the Ottawa area, the third-party fundraising events are cancelled as well. Judy asked that if you see kids out there raising funds, please support them. An option would be to pick up the phone and call in a donation.
Nancy Morris advised that she saw the C.H.E.O. Telethon and it was absolutely amazing!
A suggestion was made for each member to determine the amount of fines or Happy Buck money they have rung-up over these online meetings. Then put that money in a separate envelope to bring to the June 15th meeting for donation to HSC Children’s Miracle Network.
Nancy Morris thanked all our guests and advised that a donation in Kathryn and Andrew’s names would be made to ShelterBox. The club donates one ShelterBox per year at a cost of $1,200.00 The R.C.C.C.F. donates one more as well.
Eli said that he is looking forward to meeting all the CMN champion Children next year in Florida. He will also be looking for Kathryn and Andrew. “I will find you in the crowd next year”.
*The following was sent to Nancy post meeting;
Thanks for having us Nancy.
Here is the web link to the Manitoba Champion videos; I’d really appreciate if you could share with the group so they can see Brady’s video. My son’s video is there too - Logan’s Story.
Also, if the Rotary is interested in doing any fundraising for our Child Life program, we’d love to share info on that through our social media platforms.
Lastly, if anyone would like to donate directly to Brady’s Fundraiser, simply hit “donate now” when on his page: http://goodbear.ca/Brady . It would cheer him up while he is in hospital!
Thank you, Kathryn McBurney
