Two-year-old Charlie plays with her mom, Bekah, in their Langley City home. Miranda Gathercole Langley Times

Two-year-old Charlie plays with her mom, Bekah, in their Langley City home. Miranda Gathercole Langley Times

BC toddler with ‘allergy’ to sun waiting for bone marrow transplant

Charlie Lock, 2, needs treatment for damage caused by rare disorder EPP

While most children are enjoying the sunny summer weather outside, two-year-old Charlie Lock is stuck inside her parents’ Langley City condo.

The scabs on her face have healed, but photographs remind her parents of the intense burns she received when she was exposed to the sun.

The toddler suffers from Erythropoietic protoporphyria (EPP), a rare genetic disorder caused by elevated levels of porphyrin (a chemical that absorbs visible light) in the blood.

About 300 cases of the disease have been reported worldwide, according to the American Porphyria Foundation, but Charlie has an even rarer, more damaging form that causes porphyin to build up in her liver.

“She’s the youngest documented case of it being this severe this early,” said Charlie’s mom, Bekah Lock.

“The very simple version is, she can’t go outside or she can’t be near any open light sources. So even in a mall where there’s skylights, she can’t be anywhere near that.

“The UV (ultra-violet) rays in the sun — her body can’t metabolize them. And so it builds up to what feels like a second degree burn under her skin. It is incredibly painful.”

While some people with the disease are able to tolerate being outdoors on overcast days, Charlie cannot.

Instead, she remains inside, shielded from the sun by UV film installed on her parents’ apartment and vehicle windows.

While there is no cure for the disorder, Bekah and her husband, Kelsey, are hopeful a bone marrow transplant will greatly improve Charlie’s life.

If successful, the new bone marrow could allow her body to create the enzyme needed to break down porphyrins, and potentially save her from a liver transplant in the future.

Now she just needs a donor.

So far, no match has been found on the international database. If one isn’t found by the fall, either Behak or Kelsey will make a donation.

But both parents carry the gene that causes EPP, meaning there is a much lower chance the operation will work.

“There’s not a ton of cases where they’ve done a bone marrow transplant, but it’s our only option, realistically,” Bekah said.

“The hope is that at least it will save her liver, and we wont need to replace that as well.”

Through the chaos, one of the big issues Bekah has found is a lack of services for those suffering with the rare disorder. EPP is classified as a chronic illness, rather than a disability, meaning far less aid is available to Charlie and her family.

“That (classification) doesn’t quite cover what her limitations are,” Bekah said.

“Charlie will never be able to access public resources, she will never be allowed to take transit, she won’t be able to have a traditional job.

“If it was a more recognized disorder, she could get more support and be more normalized.”

Langley’s Corinna Mante has been campaigning the government to make this change since 2001.

Both of her sons, Willem, 19, and Marcus, 17, also suffer from EPP.

The Langley Times covered the Walnut Grove family’s journey extensively in the early 2000s.

At that time, the disorder wasn’t even considered a chronic illness. Mante had to fight with the provincial government to have it recognized, and then with the Langley School District to get a teacher’s assistant for her children, who couldn’t participate in any outdoor activity.

Now grown, the boys have learned to live an adapted lifestyle. Willem is studying kinesiology at the University of the Fraser Valley — a career that will allow him to work indoors — and Marcus is entering Grade 12 at Langley Fine Arts School. Both work part-time at McDonald’s in the back of the restaurant where there are no windows.

But they still face many challenges, especially financially. If the disorder were recognized as a physical disability, it would help them out immensely with the expenses of purchasing specialty UV shielding clothing from Australia, titanium dioxide sunblock and window filters, Mante said.

Each year Mante continues to advocate to the federal government. Working with specialists from Children’s Hospital, she dutifully fills out the paperwork for disability funding, only to be repeatedly denied.

“When we got the diagnosis, I’ll never forget the day. I looked at the doctor and I said, ‘Can you please connect me with the local support group?’ And she looked at me and she said, ‘There is no local support group. There are so few cases in the world, I’m so sorry.’

“So then I realized that my husband and I had to be the advocates for our kids. And we had to do whatever we could to assist any other people who were diagnosed with that,” Mante said.

“I had to source everything out, do all of the research myself. You’re looking at the support group of Canada — Bekah and I.

“Nobody knows what it’s like to not have anyone to say, here’s a local support group, here’s a pamphlet of the ‘dos’ and ‘don’ts,’ this is where you can purchase medication. There’s nothing available for us. It’s just us.”

In the case of Charlie, the Lock’s family friend, Melody McGillivray, has started a GoFundMe to help fill the gap.

Money raised will go towards covering the family’s expenses while Charlie is in hospital for her bone marrow transplant.

Bekha is currently a full time student at Kwantlen Polytechnic University, while Kelsey works full time in the construction industry. Both will be taking time off to help their daughter during her recovery.

For more information, visit the ‘Charlie’s family needs your help!’ GoFundME page.



miranda@langleytimes.com

Like us on Facebook and follow us on Twitter

Get local stories you won't find anywhere else right to your inbox.
Sign up here

 

Two-year-old Charlie plays with her mom, Bekah, in their Langley City home. Miranda Gathercole Langley Times

Two-year-old Charlie plays with her mom, Bekah, in their Langley City home. Miranda Gathercole Langley Times

Charlie Lock, 2, suffers from the rare disorder, EPP, which causes her to have severe reactions to sunlight. She had intense burns on her face, before doctors diagnosed her with the condition. Photo via GoFundMe

Charlie Lock, 2, suffers from the rare disorder, EPP, which causes her to have severe reactions to sunlight. She had intense burns on her face, before doctors diagnosed her with the condition. Photo via GoFundMe

Charlie Lock, 2, suffers from the rare disorder, EPP, which causes her to have severe reactions to sunlight. She had intense burns on her face, before doctors diagnosed her with the condition. Photo via GoFundMe

Charlie Lock, 2, suffers from the rare disorder, EPP, which causes her to have severe reactions to sunlight. She had intense burns on her face, before doctors diagnosed her with the condition. Photo via GoFundMe

Charlie Lock, 2, suffers from the rare disorder, EPP, which causes her to have severe reactions to sunlight. Miranda Gathercole Langley Times

Charlie Lock, 2, suffers from the rare disorder, EPP, which causes her to have severe reactions to sunlight. Miranda Gathercole Langley Times

Just Posted

B.C.’s parliament buildings in Victoria. (Photo: Tom Fletcher)
Surrey gets two cabinet ministers, a parliamentary secretary and government whip

Premier John Horgan’s NDP MLAs were sworn in on Tuesday and the cabinet was revealed Thursday afternoon

Steve ‘Elvis’ Elliott performs for residents of Amica White Rock. Exercise-to-music programs that led to a threat of city fines due to a noise complaint are to resume next week. (Contributed file photo)
COVID-19 outbreak declared at Amica White Rock

Peace Portal Seniors Village outbreak declared over

Wickson Pier in Crescent Beach is closed to the public, as work to replace and repair piles continues. (Susan Richards de Wit photo)
PHOTOS: Repairs to Crescent Beach pier complete

$180,000 Wickson Pier project included pile replacement, says City of Surrey parks manager

Surrey city Councillor Brenda Locke. (File photo)
Brenda Locke trying to breathe life into Surrey’s defunct Public Safety Committee

Surrey councillor’s motion will be up for debate at a future council meeting

RCMP logo
Keen-eyed neighbour’s call to police helps stop South Surrey burglary in progress

Mounties were on the way before suspects triggered home alarm

B.C. Health Minister Adrian Dix and provincial health officer Dr. Bonnie Henry update the COVID-19 situation at the B.C. legislature, Nov. 23, 2020. (B.C. government)
B.C. sets another COVID-19 record with 887 new cases

Another 13 deaths, ties the highest three days ago

Arthur Topham has been sentenced to one month of house arrest and three years of probation after breaching the terms of his probation. Topham was convicted of promoting hate against Jewish people in 2015. (Photo submitted)
Quesnel man convicted for anti-Semitic website sentenced to house arrest for probation breach

Arthur Topham was convicted of breaching probation following his 2017 sentence for promoting hatred

Langley School District's board office. (Langley Advance Times files)
‘Sick Out’ aims to pressure B.C. schools over masks, class sizes

Parents from Langley and Surrey are worried about COVID safety in classrooms

Cannabis bought in British Columbia (Ashley Wadhwani/Black Press Media)
Is it time to start thinking about greener ways to package cannabis?

Packaging suppliers are still figuring eco-friendly and affordable packaging options that fit the mandates of Cannabis Regulations

Join Black Press Media and Do Some Good
Join Black Press Media and Do Some Good

Pay it Forward program supports local businesses in their community giving

The baby boy born to Gillian and Dave McIntosh of Abbotsford was released from hospital on Wednesday (Nov. 25) while Gillian continues to fight for her life after being diagnosed with COVID-19.
B.C. mom with COVID-19 still fighting for life while newborn baby now at home

Son was delivered Nov. 10 while Gillian McIntosh was in an induced coma

B.C. Premier John Horgan, a Star Trek fan, can’t resist a Vulcan salute as he takes the oath of office for a second term in Victoria, Nov. 26, 2020. (B.C. government)
Horgan names 20-member cabinet with same pandemic team

New faces in education, finance, economic recovery

A new ‘soft reporting’ room is opening inside the Ann Davis Transition Society offices on Dec. 1, 2020 which is thought to be the first of its kind in B.C. (Ann Davis Transitional Society/ Facebook)
New ‘trauma-informed’ reporting room opening next week in Chilliwack

It’s a space for reporting domestic violence, sexual assault, or gender-based violence to police

The corporate headquarters of Pfizer Canada are seen in Montreal, Monday, Nov. 9, 2020. The chief medical adviser at Health Canada says Pfizer’s COVID-19 vaccine could be approved in Canada next month. THE CANADIAN PRESS/Ryan Remiorz
Health Canada expects first COVID-19 vaccine to be approved next month

Canada has a purchase deal to buy at least 20 million doses of Pfizer’s vaccine,

Most Read