Durban mother crowdfunds to provide comfort for her son battling Duchenne Muscular Dystrophy

IN a heartfelt effort to enhance the quality of life for her son, a mother from Durban has turned to crowdfunding to raise funds for a specialised bed to keep her son, who has end-stage Duchenne Muscular Dystrophy, comfortable.

Iris Govender this week started a Backabuddy page to raise R150 000 for her son Jezreel.

Jezreel, 24, from Phoenix, has been fighting Duchenne Muscular Dystrophy (DMD) since he was diagnosed at the age of six.

Duchenne muscular dystrophy (DMD) is a genetic disorder that causes progressive muscle degeneration, affecting mainly boys, with symptoms typically appearing in early childhood. Key symptoms include muscle weakness, difficulty with motor skills like walking and climbing stairs, frequent falls, and a waddling gait.

"We care for Jezreel at home. Management includes suctioning, oxygen support and heart monitoring, positioning, prevention of pressure sores, and complete assistance with all daily care. "Jezreel now has DMD-related dilated cardiomyopathy, and his doctors have gently told us that we are in the final stage and that we should make him comfortable. There is no cure, only comfort, dignity, and pain control," said Govender.

She said Jezreel gradually lost the ability to walk and had to use a wheelchair at the age of 10.

"Simple things slip away, walking, to feed himself, clothes you cannot put on, tears you cannot wipe, cuddles you long to give, a hug you ache to share and a voice falls silent, all gone, piece by piece. Jezreel battles chronic pain, severe muscle wasting, respiratory weakness, recurring infections, kidney issues, morning headaches from carbon dioxide buildup, difficulty regulating temperature, and full dependency for every activity. Each year brings new losses, but he continues to face everything bravely," she said.

Govender said Jezreel is not audible and communicates through soft whispers.

"Even through all this, Jezreel still has a gentle spirit. He listens to music, loves having me near him, and stays brave despite the pain in his bones, more on pelvis, and tailbone. His body is extremely thin now, and he cannot move or reposition himself," she said.

Govender said they manage his pain with medication and monitor his heart rate and breathing.

She said they need a Arjo Auto Logic Pressure-Relief Mattress and Hospital Bed as it helps prevents severe pain and pressure sores.

"The Arjo Auralis mattress is a specialised, hospital-grade pressure care system designed for patients with very high risk of pressure injuries and for those who are completely bed bound," she said.

Govender said Jezreel's monthly medical care essentials include diapers and linen savers, all his machine consumables including tracheostomy and G-Tube supplies, humidifier water, emergency oxygen backup and medication.

She said Jezreel's wish was to be comfortable, warm, safe, and pain-free.

"Every contribution goes directly toward easing his suffering and making these final months gentler.

"Any unused funds may help with his final arrangements, ensuring he is laid to rest with the same love, care, and gentleness we give him every day. This is one of the hardest realities for any mother, but I trust that God will carry us through even this part of the journey," said Govender.

SUNDAY TRIBUNE