Melissa White didn’t seem like herself.
A mother of three young children in North Langley, she was normally very active and on the go all the time. But she was slowing down, forgetting words and becoming irritable. Her husband, Jeremy, and other members of her family figured she was depressed. Having just given birth to her third child, the bills were starting to pile up as were demands from the kids. But as the months went on, things were only getting worse, not better. This was in June, 2010.
“After a while her speech started to worsen, she wasn’t able to clearly explain anything, express emotion or understand the differences in emotion,” Jeremy said.
“She’d either start repeating words over and over again, start slurring words or start mumbling. We were trying to sit down with her to see if she was in depression still. We’d say ‘how do you feel?’ and she wouldn’t be able to explain that to us. After a while it was getting worse and worse, and she started getting more and more quiet.”
By early winter, Jeremy feared there was something very wrong with his wife and took her to see a doctor. They were referred to a neurologist who did many tests, some of which were sent to Philadelphia for extra analysis. Spinal taps, blood work, electroencephalograms (EEG), brain scans and magnetic resonance imaging (MRI) were all leading doctors to a conclusion they thought was impossible.
Just 10 months after her third child was born, Melissa was diagnosed with ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s disease, and Frontotemporal Dementia (early onset Alzheimer’s). At only 29 years old, she was an extremely rare case. Not only was she one of the youngest people in North America ever recorded to have both diseases, but only 10 to 15 per cent of ALS patients around the world are also diagnosed with Frontotemporal Dementia.
ALS is a fatal neurodegenerative illness that progressively paralyzes one’s body, eventually making it impossible to breathe or swallow. One in 50,000 Canadians are diagnosed with it each year.
Frontotemporal Dementia, similar to Alzheimer’s, causes irreversible damage to brain cells in patients younger than those normally diagnosed with Alzheimer’s. Those with the disease may suffer from memory loss, changes in behaviour and difficulties with speech and movement. Melissa presented almost all of these warning signs prior to her diagnosis.
“Around that time she was trying to talk, but wasn’t really capable, and what she was saying was only very short words, not really any sentences,” Jeremy said.
“For a long time, all she seemed to be capable of saying was ‘no’ or ‘mom.’ So she called everyone ‘mom.’ She did that for a few months and around last summer (2011) she just stopped talking altogether. You had to guess what she was wanting or needing, if she was actually feeling pain or not, because the dementia part was affecting the lobes of her brain that were able to control cognitive thinking and emotion.”
Although in most cases ALS diagnoses are random, occurring in patients with the right combination of activated genes, Melissa’s was hereditary. Her aunt on her mother’s side is currently battling ALS, and her grandmother and great uncle both died of the disease.
On March 2, 2012, just 13 months after her diagnosis, Melissa passed away. She is survived by her husband, Jeremy, and her three children, Maddox, 2, Jordana, 4, and Alexander, 6.
For Jeremy, after caring for his wife in the late stages of her disease, trying to pick up life where he left off has been difficult. As he has to leave for work at the Future Shop in Coquitlam at 5 a.m., his kids now stay at his parents’ house during the week, and go home with him on weekends.
“The kids miss her,” Jeremy said. “Alexander sometimes says that he wishes things would turn around and go backwards, that things would go back to normal. He told me once that we needed to go to the mommy store and get a new mommy.”
Anita McCarthy, a former neighbour of the Whites, was shocked when she heard the news of Melissa’s diagnosis and passing. She has started a fundraiser for the White family to help ease the sudden financial burden they are facing.
The Melissa White Legacy raffle and burger and beer event, being held at the Fort Pub on June 24, has the potential to raise $20,000 in raffle ticket sales alone, thanks to a partnership with the Rotary Club of Langley. With more than $12,000 in silent auction prizes, numerous corporate donations, a personal tragedy account set up at the Royal Bank and an online auction from June 10-17 through their Facebook page, McCarthy is confident the community can make a huge difference in the lives of the family.
“I just turned 30 and we have kids of similar ages, so I can’t even imagine what they are going through,” McCarthy said, adding that she lost her brother in 2003 and remembers how difficult it was to move on.
“I really wanted to actually do something to help the family, just because I have experienced a loss and it feels horrible. Your life feels suspended and you have all of this grief when it seems everyone else's lives go on.”
The burger and beer night is already sold out, but should the Fort Pub finish their patio renovations prior to the event date, more tickets will be available. Tickets for the raffle are still on sale for $10 each at many locations, including the Future Shop on the Langley Bypass, the Petro Canada gas station on 72 Avenue and 200 Street, Colour me Mine at 6339 200 St., Nestle Tollhouse Cafe at Guildford Town Centre, and online by emailing whitefamilytrustfund@gmail.com.
Only 2,000 tickets are being sold, making the odds of winning very high, McCarthy said. Grand prize for the raffle is two round trip tickets anywhere WestJet flies. Second prize is a two-night stay at Black Rock Oceanfront Resort in Ucluelet and two round trip flights with Orca Airways (worth more than $1,600). Third prize is a $1,000 gift card basket from local businesses. Fourth prize is a Canon Eos Rebel T2i 18-55 mm lens, 430x speedlight and bag package ($899 retail).
Local Chartered Accountant Eric Nyvall has also donated several seven-night vacations in locations such as Aruba, Orlando and Kauai, with all proceeds going directly to the White family. These are currently being auctioned off on Facebook.
Plus, ‘Fin’tastic’s Cuts For Kids hair salon, 101—15905 Fraser Hwy., Surrey, is having a business blitz week, from May 26 to June 2, where a portion from all haircuts will be donated to the cause.
“It’s inspiring to see how others are connecting with the family, even though they have never met them before,” McCarthy said.
“It doesn’t matter if you are best friends with the person, if I was in that life situation, I would want someone to do likewise.”
Jeremy says he is overwhelmed with the support the community has shown to his family.
“Anita has been a really big help because she just took it upon herself to do all that. She’s never done a fundraiser before and she’s had all these corporations donate things. It’s been really good to know that there’s a lot of people out there, whether I know them or not, who really care and want to be able to help out and support us,” he said.
Those wishing to donate directly to the White family can do so through the ‘In Trust for the White family’ account at the Willowbrook Royal Bank branch, 19888 Willowbrook Dr.
For more information on the fundraisers, visit whitefamilytrustfund.weebly.com, the ‘Melissa White Legacy Event & Raffle’ Facebook page or email Anita McCarthy at whitefamilytrustfund@gmail.com.