Hanover toddler needs heart transplant, fundraiser for Hopkins family June 19
Fred and Marian Hopkins of Bencrest Holsteins and Edencrest Swiss in Hanover, Ontario granddaughter awaits a Heart Transplant at Toronto Sick Kids. A fundraiser has been organized to help this family with the medical and travel expenses they will be facing in the upcoming days.
As written in the Hanover Post by Patrick Bales:
A group of residents in Hanover are banding together to help a local family, whose one-year-old daughter is currently at the Hospital for Sick Children in Toronto awaiting a heart transplant.
To help the Hopkins family with mounting medical bills, travel expenses and the costs of living away from home, two fundraisers will be held in Hanover June 19. As well, a trust fund has been set up.
Lilah Hopkins is the daughter of Courtney and Eric, born April 18, 2013. In many ways, she’s your typical 14-month-old. She spends time with her sister, Macie. She’s a happy, strong little girl, whose favourite movie is Frozen. In her own little way, she sings along and dances to the movie’s trademark song, “Let It Go.”
But Lilah is facing a battle no child should ever have to face, and the community is rallying around her family accordingly. In February, she was diagnosed with Dialated Cardiomyopathy, a condition in which the heart becomes weakened and enlarged and is unable to pump blood efficiently.
According to the Children’s Cardiomyopathy Foundation, one out of every 100,000 children in the United States suffer from Cardiomyopathy.
“The news was gut wrenching,” wrote Courtney Hopkins in an e-mail. “Twenty-four hours prior we were home with our beautiful, healthy baby and now we were being told that her heart was functioning at 13 per cent and could possibly need a heart transplant.”
But Lilah is a fighter. Ten days later, she was released from hospital and given a series of medications to take the stress off her heart, with the hope it would start to repair itself.
All seemed to be working out, and Lilah was able to spend her first birthday in Hanover with her family. However, over the Easter weekend, her condition worsened. A trip to the emergency room at Grey Bruce Health Services in Owen Sound ended with the one-year-old being transferred to the Children’s Hospital at London Health Sciences Centre.
Today, Lilah is in Toronto, and will be at the Hospital for Sick Children for the foreseeable future. On May 6, she was had a Berlin Heart inserted.
“Her days consist of physio, walks and lots of play with her sister, Macie,” Courtney Hopkins wrote. “It’s so wonderful to see her big smile again. She is so strong and some days I feel like she’s telling us that everything will be okay.”
Lilah Hopkins, right, with her older sister, Macie. (Photo Submitted)
A temporary fix until a donor heart is found, Lilah is one of the youngest recipients of a Berlin Heart to date. The device is considered to be a more effective tool in the management of heart failure, according to research published in the New England Journal of Medicine.
However, the Berlin Heart is no substitute for a heart transplant. To ensure her survival, Lilah and her family are waiting to receive word on a donor heart.
While raising money to help the Hopkins family get through this difficult time is important, Lilah’s father is hopeful the events of June 19 will help raise just as much awareness of the necessity of organ donation.
“Organ donation is a really tough conversation to have, but it’s one that can save lives,” Eric Hopkins said in a phone conversation last week.
As many as 85 per cent of Ontarians believe in organ donation, but only 25 per cent are registered as organ donors. More than 1,500 people are currently on a waiting list for an organ transplant, 69 of those are waiting for a heart.
When a tragic situation, such as the death of a child occurs, parents are often faced with a seemingly insensitive question and an untimely decision.
“When parents lose children and they’re asked ‘what do you want to do?’ it’s the wrong time,” Eric Hopkins said.
Rather, Lilah’s father hopes parents will have the discussion with each other in advance about organ donation, regarding their children and themselves.
It’s a discussion that could save Courtney and Eric Hopkins’ daughter’s life.
“We sit patiently, waiting and praying that in the midst of sadness and loss that family member makes the decision of organ donation,” Courtney Hopkins wrote. “It’s a conversation that we hope families have, and that people fully understand what a miracle it can be.
“It truly is the gift of life,” she continued. “And this selfless act could give Lilah the chance to live.”
The benefit evening is called Light the Night for Lilah and will take place at two venues in Hanover June 19.
At Tommy D’s, two dinners will be held, one at 4:30 p.m. and the second at 7 p.m. For $20, you get your choice of Swiss chicken melt or beef, served with potato, salad, vegetables, dessert and coffee/pop. There will be raffles and a donation jar during each service.
Beginning at 8 p.m. at Crabby Joe’s, a $20 ticket gets you food and entertainment, featuring Need An Elevator. At Crabby’s there will also be a live auction, raffles and a donation jar.
Donation jars are now available throughout Hanover at Natural Touch by Betty, JD’s Flooring, Buck’s Crossing and Lasting Memories Locker Room. You can also submit a cheque made out to Eric, Courtney or Lilah Hopkins at those locations, as well as Johnny K Sports.
A trust fund has also been opened for the Hopkins family at RBC. You can donate to that account at the RBC branches in Hanover, Durham, Owen Sound, Listowel, Fergus, Arthur, Moorefield, Drayton, Harriston and Clifford.
For more information about how you can help out with Light the Night for Lilah, contact Neil Simpson at 519-364-2610 or [email protected].
For more information on organ donation, visit beadonor.ca.