One mother’s ‘private hell’ brings hope to another

MBOMBELA – Tebogo Moya was nervous about meeting Antoiné Dingle on Wednesday.

Few people can help falling for the lively three-year-old. Yet, that rumble in Antoine’s chest when she is overdue for a suctioning, brings back bad memories for Moya.

Like Antoine, Moya’s daughter Melusomuhle had a tracheostomy.She had a cancer growth on her chest obstructing her airway, which necessitated the trachi. It entails making a hole in the toddler’s throat to enable her to breathe.

Melusomuhle died of cancer more than two years ago, on March 16, 2016. She was four years old.

Shortly after she died, previously ordered trachi supplies were delivered by the medical aid. Moya never opened the boxes until she read about Antoiné in Tuesday’s Lowvelder.

This little girl suffers from central apnea hypopnea syndrome and got her trachi in April. Moya met Antoiné and her mother, Melanie Dingle on Wednesday.

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Not only does your child have a hole in her throat, but you have to remove and clean the apparatus daily (a painful process), suction her chest (they can’t swallow their own mucous) and keep a very close eye on her all the time to ensure it does not come out.

Dingle was overjoyed: not only at receiving the much-needed supplies, but also at finding a friend who knows the private hell of being a caregiver to a child with a trachi.

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Until Wednesday, the Dingles had to rent a suction machine. Moya simply did it herself. “The doctors recommended using a vacuum cleaner, but the noise upset Melusomuhle, so I did it with my mouth.”

Moya’s baby was diagnosed with brain cancer at seven months.

Melusomuhle had chemotherapy and was cleared until she developed a growth on her head.

After it was successfully removed the growth near her throat was discovered. Eventually the cancer spread all over her body, and she passed away.

“You go through all this pain and suffering and at the end you hope that you’ll have your daughter, your trophy,” Moya tells Lowvelder. “When she died it was like a double trauma.

“Only when you are out of it you realise how strong you had to be. Nobody understands.”

Dingle agrees. “People try to understand, but they can’t.”

There is the sleep deprivation and negotiations with their toddlers to allow them to reinsert the trachi after its daily cleaning. There is depriving their other children of things material and emotional, as everything goes towards the sick child.

“I felt the tiredness, the stress, the heartache,” Moya continues. “It steals your peace.”

“Melusomuhle was like your daughter,” Moya tells Dingle. “She was playful and loved people. She always asked me, ‘Mommy, what is this?'” pointing to her throat.

The trachi affects the kids’ lives and the Dingles are aiming to get Antoiné a diaphragm pacemaker, which will make the trachi redundant and give her a normal life.

READ MORE: Gemeenskap maak vir Antoiné hul harte en hande oop by Innibos

So far they have raised a lot of money (of which much goes towards Antoiné’s monthly medical expenses) and an opportunity to obtain the pacemaker at cost price. Yet they are still around R150 000 short for the apparatus alone.

“I need you to be strong,” was her parting words to Dingle. “Nobody can do this for you.”

Her family has started the Melusomuhle Foundation to raise awareness of sick kids – and money to help their parents and caregivers. She is planning a family fun event on September 29. To get in touch, contact Moya on [email protected]

To contact the Dingles, phone Melanie on 071-240-1005 or 062-466-8191 and dad Attie on 071-240-1004.

  AUTHOR
Mireille de Villiers
Journalist

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