Durban - Watching a beloved child succumb to a rare, life-threatening disease is heartbreaking and Darryn and Sam Rex of Glenwood, Durban, are doing all they can to save their daughter Brooklyn, 17 months.
A healthy baby until nine months ago, Brooklyn, has been diagnosed with Haemophagocytic Lymphohistiocytosis (HLH), a rare blood disorder, and will possibly need treatment overseas to save her life.
Estimates of the cost are in the millions, so friends and family have embarked on a massive fund-raising drive, including a benefit show at the Barnyard Theatre, uMhlanga Ridge, on Monday.
Brooklyn was born six weeks prematurely, in March last year, weighing 2.1kg. She was a fighter, say her parents, and two weeks later, they took her home.
“She went from strength to strength and there were no indications of any disease or problems that lay ahead,” says Samantha, 30.
At the age of about 8 months, she started picking up illnesses easily.
She had Rotavirus three times, despite having been vaccinated against it.
Just after Christmas, she was hospitalised with bronchiolitis, and again in February and March.
“Towards the end of March, Brooklyn started with a persistent fever, vomiting and not wanting to eat or drink,” says Darryn, 37.
“She had a rash and was admitted to hospital for tests. Before the diagnosis, she was treated for Kawasaki Disease, and doctors also suspected lupus, lymphoma, tumours, leukaemia and other dread diseases.”
Brooklyn was finally diagnosed with HLH, a potentially fatal condition in which certain white blood cells build up in organs including the skin, spleen, and liver, and destroy other blood cells.
The incidence is one in 1.2 million children, though the figure could be as high as 1 in 500 000 because many go undiagnosed.
“We felt defeated by the diagnosis,” says Darryn.
“It was an emotional roller-coaster and every other day we had a new mountain to climb.”
There are many variations of HLH and doctors are trying to establish which one Brooklyn has. Treatment is tailored to the child, based on the type of HLH.
“We have been informed that with her underlying immune problems, she will probably need treatment overseas,” says Darryn.
“Quotes from overseas hospitals have ranged between R7.5-million and R19-million for treatment, including a bone marrow transplant, which our medical aid plan will not cover.”
At the moment, the family is in Cape Town, as doctors do tests and consider treatment options. Brooklyn is in ICU at the Vincent Pallotti Hospital as she has a bacterial infection.
A Facebook page, Hope for Brooklyn, has had more than 2 000 “likes” and several fund-raising events, some in other countries, have been planned. The band Loadshedder and Live – the Venue are organising an event with other bands in September.
The Rex family say they will not give up on their quest for recovery for their child. Any money not used for Brooklyn will be used for children in similiar situations.
“To any parents who find themselves in a similar situation, dealing with something of this rarity, don’t ever stop fighting for your child. Trust your instinct. You know your child better than anyone,” says Darryn.
* A fund-raising show will be staged at The Barnyard Theatre, Gateway on Monday August 18 at 8pm.
Hosted by Investgold, it includes a line-up of musical talent including the band Customized (who won the Kearsney Battle of the Bands last year), vocalist Siya Mayeza, rock act Avade and vocalist Eskimo Writer, who is coming from Johannesburg to perform.
Comedian Patrick Kenny will MC and there will be complimentary snack platters. Investgold has donated a KrugerRand worth R15 000 to raffle while Glenfiddich is sponsoring a complimentary whisky tasting.
Tickets at R250 are available at Computicket, Checkers and Shoprite.
* See Hope for Brooklyn on Facebook for more information. https://www.facebook.com/HopeforBrooklynRex.
Daily News