The family of three-year-old Sully Majothi have raised £9,000 for Birmingham Children's Hospital Charity after the youngster survived two cardiac arrests and spent more than 14 months on the hospital's Paediatric Intensive Care Unit (PICU).
Sully, from Birmingham, was diagnosed with SMARD1, an extremely rare inherited nervous system condition that causes muscle weakness and respiratory failure. According to Spinal Muscular Atrophy UK, symptoms of SMARD1 usually begin to show between six weeks and six months of age, and there is currently no treatment or cure.
A terrifying hospital admission
Sully was rushed to the emergency department when he was eight months old after he suddenly stopped feeding, his skin became mottled and he had difficulty breathing. After initial treatment, his parents thought he was on the road to recovery. But in the early hours of the following day, he went into cardiac arrest.
Doctors performed CPR immediately and restarted his heart after two minutes. Sully was then moved to the Paediatric Admissions Unit (PAU) for close observation. Just 24 hours later, he suffered a second cardiac arrest, with his heart stopping for 18 minutes. Medics fought to save him and succeeded, placing him on a ventilator.
However, the family received devastating news: because Sully's heart had stopped for so long, he was likely to have just hours to live. His father Muhammed, who was doing voluntary work abroad at the time, rushed home to be with his family.
A rare condition and a permanent dependency on a ventilator
Further tests revealed that Sully was suffering from SMARD1, and doctors concluded that respiratory arrest had been causing the cardiac arrests. He could not cope without a ventilator, and his family accepted that he would need one for the rest of his life.
A month before his first birthday, Sully underwent a tracheostomy to help him breathe. After 14 months of fighting on PICU, he was finally well enough to go home.
Today, Sully lives with his parents and his two older brothers. He continues to require round-the-clock nursing, supported by a dedicated nursing team and his family.
His mother Afshana said: "He overcome so much, he's my miracle baby. He's been at home for over a year and there are plans for him to start school. We never thought that was possible. With the right clinical team, support and training, children with severe complex needs such as SMARD1 can still live a meaningful life at home."
Fundraising to say thank you
Determined to give back, Afshana and Muhammed shared Sully's story with their wider community and called for donations to support the hospital's PICU. Their campaign raised a total of £9,000 to help children like Sully who may need intensive care.
"Spending so much time in hospital was hard for all of us, but PICU became our second family. All the staff were so compassionate and helped us so much. Supporting them was just our small way to give back. No amount would be enough to say thank you," Afshana added.
Charity's gratitude
Annie Eytle, Head of Public Fundraising at Birmingham Children's Hospital Charity, thanked the family for their remarkable efforts.
"What Sully and his family faced is beyond imagining. It's deeply moving to see how Muhammed and Afshana have fought for Sully, and to see where he is now, and what he's managed to overcome. The generous £9,000 raised by Sully's family will help us continue to go further and provide the very best care on our PICU for seriously ill children," she said.
The £9,000 raised will support the PICU's vital work, helping to ensure that clinicians can continue to provide life-saving care to other children with complex needs.
