Family fights debilitating illness

Reece Trumpelmann (11) suffers from Gorlin-Goltz Syndrome, affecting much of his body and making him more susceptible to several forms of cancer.

Reece Trumpelmann was diagnosed with Gorlin-Goltz Syndrome in February, and has been in the waiting rooms of numerous medical specialists and has undergone two operations, since then.

The disorder makes the Bapsfontein resident more susceptible to several forms of cancer.

Reece has to apply sun screen cream several times per day, and he has to wear special ultraviolet light-resistant clothing most of the time.

“In December we had a jumping castle here, and while the children were playing, another boy accidentally bumped into Reece, knocking him on his jaw,” said his mother Marsha.

“Immediately there was a bump on his jaw, but we didn’t think much of it. “When we took him to a doctor, she said she couldn’t help; he had to see a specialist.

“We took him to the Steve Biko Academic Hospital, where he was diagnosed with Gorlin-Goltz, and we were told the knock to his jaw had caused a tumour to grow.”

Since then the 11-year-old has had trouble with tumours developing on his jaw, eating away at the bone.

“He’s had two major operations to his jaw so far and has to go in again soon,” his mother said. Most of the manifestations of the disorder, including skin cancer, skin pits, skeletal abnormalities, jaw tumours and more have been observed in Reece.

She added: “Luckily he does not have a brain tumour, and we are still waiting to see whether his heart is affected, but the syndrome makes him susceptible to both.”

Marsha noted Reece also needs a special diet and has to wear special shoes, to counter the effects of scoliosis, which is also a manifestation of the disease.

“There is no cure and he can’t receive any chemo-therapy or radiation, because it can cause or worsen any cancer in his body, rather than fight it.”

At the moment, the family is waiting for the results of a genetics test, which will determine whether Reece has both strains of Gorlin-Goltz, or only one.

“If it’s only one, the symptoms can be slowed with treatment,” his mother explained.

“He’s a very good boy and stays positive. “He has adapted well to it all.

Going to a hospital, especially as often as he has to, is not nice, but he does it anyway.

Marsha said he hasn’t been to school this year.

“Between the dangers of it and the time he has to spend with doctors or at the hospital, he simply can’t go to school,” she explained.

He can’t take part in sport and many nights Marsha has to stay awake with her son when he can’t sleep due to the pain.

“The tumours are far more aggressive than they should be,” Marsha said.

“Based on his documents, a doctor in the USA said it is the worst case she’s ever seen; and she deals with this disease on a daily basis.”

The nature of the disorder has also taken its toll on the family, including Marsha, Reece’s father Bjorn and his sisters, Abigail (17) and Savannah (16) Trumpelmann.

Despite the new pressures created by Reece’s diagnosis, Marsha and her children were prominently seen and involved in helping the community of Nest Park after it was hit by a tornado in July.

Reece has been treated at the Steve Biko Academic and Charlotte Maxeke Johannesburg Academic hospitals since his diagnosis in February.

His mother said she has been looking into the possibility of taking Reece to the USA, where treatment of Gorlin-Goltz is more extensive than in South Africa.

Marsha said the doctors in the USA will be able to save Reece’s jaw, irrespective of the genetics test’s results.

The family was caught by surprise and did not have a medical aid scheme when Reece was diagnosed.

“We are looking at getting one, but it will be expensive due to his condition,” she added.

The family will host a Christmas-themed fund-raiser for Reece in December, the details of which will be made available later.

For more information or to help Reece, contact the City Times on 011 425 0164 or via [email protected]


 

What is Gorlin-Goltz Syndrome?

The condition is caused by the absence or malfunction of the PTCH1 gene, which normally acts as a suppressor of tumours and other growth mutations.

Sufferers are born with the erroneous gene, but symptoms only start showing in patients during puberty.

The disease, also known as Basal Cell Carcinoma Nevus Syndrome, affects only about one in every 57 000 people.

Depending on the results of his genetics test, Reece Trumpelmann (11) could be taken to the St Jude’s Children’s Research Hospital, in Memphis, USA.

The facility provides free care to children, especially those suffering from or more susceptible to cancer and also caters for those afflicted by Gorlin-Goltz.

Another option for treatment is the Basal Cell Carcinoma Nevus Syndrome Life Support Network (BCCNSLSN), which is based in Ohio, in the USA.

This organisation provides support to sufferers of the syndrome, and aims to advance research into a cure.


 

Also read:

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Young fashionista is straight ‘outta’ Benoni

Child welfare needs funding

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  AUTHOR
Erik van Dijk
Journalist

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