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

Motorists breaking travel rules can be fined $230 for failing to follow instructions or $575 if the reason for travel violates the essential travel health order, at this Highway 3 check area near Manning Park. Photo RCMP
RCMP begin stopping drivers on BC highways – check point at Manning Park

Four check points are set up Thursday May 6 around the province

Rex, an elderly golden Labrador retriever, is surrounded by his rescuers in Golden Ears Provincial Park. (Special to The News)
VIDEO: Dog survives plunge over Gold Creek Lower Falls in Maple Ridge

Fire chief asks for visitors to be more cautious in Golden Ears Provincial Park

Supt. Wendy Mehat is officially announced as the new Ridge Meadows RCMP officer in charge. (Ridge Meadows RCMP photo/ Special to The News)
RCMP leader gets mayoral nods

Supt. Wendy Mehat has been selected as the Maple Ridge - Pitt Meadows new officer in charge

Maple Ridge secondary athletes who are on their way to compete at the collegiate level: Jade Lenton, Kaelyn Van Garderen, Ivy Threatful, Neve Hayes, Grace Hamilton, Gabby Di Girolamo, Soleil Brooks, Adrian Truong, Jack Emley Graham and missing Cassidy MacPherson. (Neil Corbett/The News)
Ramblers athletes recruited by college teams

Maple Ridge secondary has 10 graduates moving up to post secondary athletics

Dr. Biju Mathew visited Bihar twice to in order to gain perspective to write his book.
Maple Ridge doctor worried about family and friends in India

More than 400,000 new COVID-19 cases in 24 hours reported in India on Wednesday, May 5

Protesters attempt to stop clear-cutting of old-growth trees in Fairy Creek near Port Renfrew. (Will O’Connell photo)
VIDEO: Workers, activists clash at site of Vancouver Island logging operation

Forest license holders asking for independent investigation into incident

Surrey RCMP is investigating after a serious three-vehicle crash at the intersection of King George Boulevard and 128th Street Thursday afternoon (May 6, 2021). (Photo: Shane MacKichan)
VIDEO: Serious crash in Surrey sends 1 to hospital

Surrey RCMP say one of the drivers fled on foot, but was later found at an area hospital

Starting Tuesday, May 11, B.C. adults born in 1981 and earlier will be able to register for a vaccine dose. (Haley Ritchie/Black Press Media)
BC adults 40+ eligible to book COVID-19 vaccinations next week

Starting Tuesday, people born in 1981 and earlier will be able to schedule their inoculation against the virus

John Paul Fraser, executive director of the BC Salmon Farmers Association. (Screen shot)
Salmon farmers warn Surrey jobs on line as feds end Discovery Islands operations

344 full-time jobs at risk in Surrey and 1,189 B.C.-wide

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

Parks Canada and Tla-o-qui-aht Tribal Parks dig the washed up Princess M out from sand along the south shore of the Pacific Rim National Park Reserve. (Nora O’Malley photo)
Rescue attempt costs man his boat off Pacific Rim National Park Reserve

Coast Guard response questioned after volunteer responder’s speedboat capsizes in heavy swells

Al Kowalko shows off the province’s first electric school bus, running kids to three elementary and two secondary schools on the West Shore. (Zoe Ducklow/News Staff)
B.C.’s first electric school bus making the rounds in Victoria suburbs

No emissions, no fuel costs and less maintenance will offset the $750K upfront expense

The Aquilini Investment Group has agreed to a proposed contract of five years to run the Abbotsford Centre. (File photo)
Proposal to run Abbotsford Centre offered to Canucks ownership group

Planned five-year contract to cost city $750K annually, starting Jan. 1, 2022

Road sign on Highway 1 west of Hope warns drivers of COVID-19 essential travel road checks on the highways into the B.C. Interior. (Jessica Peters/Chilliwack Progress)
B.C. residents want travel checks at Alberta border, MLA says

Police road checks in place at highways out of Vancouver area

Most Read