Mom's anguish, yet determination, hope

Update

MOSSEL BAY NEWS - Mossel Bay mom Natalie Lourens says she has cried so much since her baby was diagnosed with cystic fibrosis, that she feels she has no more tears.

Baby Layla-Rose is now seven months old and she was diagnosed with the illness at five months.

Cystic fibrosis is progressive and genetic, causing lung infections and over time it hinders the ability to breathe. A defective gene causes a thick build-up of mucus in the lungs, pancreas, liver and digestive system. Sufferers do not absorb certain vitamins and these have to be supplemented. Natalie spends about 1,5 hours morning and night treating Layla-Rose and performing physiotherapy to assist with loosening the mucus from the lungs.

Cramps
She finds it heartbreaking when Layla cries in the evening because of stomach cramps. "Some newborns with cystic fibrosis have to have an operation to remove the blockage from their intestines and even part of the intestine," Natalie says.

"We must add a spoon of fat to Layla's meals to help ease constipation." Natalie works in conveyancing, for an attorney who is sympathetic about her situation, and it is hoped Natalie will be able to work from home soon.

Currently Layla is being cared for by a day mother in Hartenbos. Because cystic fibrosis (CF) sufferers are so susceptible to infections everyone must sterilise their hands before touching them. If the babies catch the wrong germ, they can die. Babies with CF cannot be in proximity to one another and children with CF younger than five cannot go to pre-school because of the risk of infection.

Lukas Korff with Layla-Rose.

Traumatic
"Every day is traumatic," Natalie says. She says babies Layla's age usually do not shed tears when they cry, but Layla has been crying tears since she was a newborn, because of the pain from the cramps she often suffers. The emotional effect on Natalie and her husband, Henco, has been immense.

"We are so grateful our other child, who is four, does not have CF." Natalie is determined to help others with the disease. Her dream is to start a foundation for sufferers, help their families financially and emotionally and ultimately help try to find a cure for CF. She says: "Medical aids in South Africa do not recognise cystic fibrosis as a chronic illness."

The only healthcare scheme that will take on sufferers is Discovery. "We have to wait 12 months before we can join Discovery because Layla had an existing condition. It will be R6 000 per month - just for me and Layla."

The routine for Layla includes saline nebulising and physiotherapy twice a day, vitamin A, D and E supplements, a multi-vitamin and immunity booster, pancreatic enzymes before every meal and reflux medicine.

Enzymes
As children grow they need more pancreatic enzymes. For a four year old these cost R6 000 per month Natalie points out. The life expectancy of CF sufferers in first world countries is 40 years maximum. Natalie is concerned there are medicines not available in South Africa because they have not yet been approved here.

On Saturday, 16 June, Lukas Korff, who is in the same church as Natalie, Joshua Generation in Heiderand, did 55 bench presses with a 50kg dumbbell underwater without a wetsuit or breathing apparatus to help raise money in the form of pledges for Layla. He set a new world record. The previous one was 40 bench presses, according to the Guinness World Records.

Rallied to help
Lukas' first wife passed away from cystic fibrosis. As soon as Lukas heard about Layla, he rallied to help her. Natalie says: "We do not get a break from this disease or the treatments. It will cost Layla dearly if we slack off. We will have to watch her health deteriorate as she gets older. We pray a lot. It is the Lord who keeps us going. Healing is still a possibility through Christ."

A Go Fund scheme has been set up for Layla for financial support.

Natalie and Henco have also started a private fund. To support them in any way, contact Natalie (076 040 9799) or Henco (079 606 3666).

'We bring you the latest Mossel Bay, Garden Route news'