9 year old Gabriel Fortuin was diagnosed with Spinal Muscular Atrophy (SMA) at nine months after his mother noticed that he was weak and not physical progressing as he grew. He had to receive physiotherapy once a day with a professional and regularly during the day from his mother, Natasha.
His health was good until the age of three, when he started school. Gabriel became severely prone to contracting respiratory infections and Natasha recalls how their family had to completely change their lifestyle to accommodate young Gabriel’s illnesses. They had to keep their socialising to a minimum and stay away from enclosed spaces such as shopping malls and rather chose to visit open parks and beaches where there was less interaction with others. Gabriel once spent five weeks confined to a hospital bed and Natasha had to resign from her workplace to care for Gabriel 24/7.
About 3 years ago Gabriel had a tracheostomy inserted – a breathing device inserted into a small incision in the throat. Doctors explained to his parents that this would assist with clearing chest secretions and would make it easier to suction as he is unable to cough it up as everyone else can.
The tracheostomy resulted in an immediate improvement in his health but after a year, Gabriel was hospitalised for yet another serious chest infection. Doctors at the Red Cross War Memorial Children’s Hospital recommended that Gabriel be put onto a ventilator at night to assist with his breathing and give him an opportunity to have a relaxed sleep. The family battled to get approval from their medical aid to cover the expense of the ventilator and had to provide strong motivations from paediatric specialists. In the interim, Sister Jane Booth of the Red Cross War Memorial Children’s Hospital arranged for Gabriel to get a ventilator on loan. Natasha was thrilled about this and she smiles with delight as she talks about the entire household having a more peaceful sleep.
“There was a dramatic change in Gabriel’s sleep and our lives,” says Natasha.
Although grateful for the ventilator, it was extremely sensitive and would sound an alarm every hour which meant Natasha was still having disturbed sleep. By supporting the Children’s Hospital Trust’s Breatheasy Programme, Anglo American Chairman’s Fund has enabled the Trust to purchase much needed equipment such as ventilators, humidifiers and suction devices and one of these ventilators has been given to Gabriel. Natasha is extremely happy with the new device and says that Gabriel’s breathes better, is well rested in the morning and is “healthier than ever before and hasn’t needed any anti-biotics for a long time”. Natasha says, “The new model is simpler to use and so it’s user-friendly for caregivers. I never realised how tough our family life was until we received the new ventilator.”