Devoted Family Raise £9,000 For Children’s Hospital’s Intensive Care Unit

A devoted family have raised over £9,000 for our charity, inspiring friends and family to support the cause after sharing their son’s inspirational care journey.   

Muhammed and Afshana Majothi, from Birmingham, raised the incredible sum after sharing their son Sully’s story with family and friends.  

Sully, now aged three, almost lost his life twice, and spent over 14 months on our Paediatric Intensive Care Unit (PICU) with a highly complex and extremely rare condition called SMARD1, for which there is currently no treatment or cure. 

In his first few months, Sully suffered from chest infections but otherwise seemed to be doing well. Then, at eight months old, Sully suddenly stopped feeding, his skin became mottled and he had difficulty breathing.   

Afshana rushed Sully to our Emergency Department, where he was immediately taken into hospital and given IV antibiotics. There were some positive early signs, and Sully seemed on the road to recovery. But Afshana experienced every parent’s worst nightmare when, in the early hours of the following day, Sully went into cardiac arrest.   

Doctors immediately performed CPR and thankfully were able to restart his heart after two minutes. The little boy was put under close medical observation, given oxygen and moved into our Paediatric Admissions Unit (PAU).   

24 hours later, Sully had another cardiac arrest, and his heart stopped beating for 18 minutes. Doctors fought hard to save the baby’s life, restarting Sully’s heart and placing him on a ventilator.    

It was such an emotionally overwhelming moment for Afshana. She’d faced the prospect of her son losing his life for a second time, and it had all happened so fast. Then doctors broke the devastating news that because Sully’s heart stopped beating for so long, he was likely to only to have hours to live.   

His dad, Muhammed, who was doing voluntary work abroad, rushed back to the UK to spend time with his son. The whole family were utterly heartbroken and prepared to say their last goodbyes.   

But to his family’s joy and amazement, Sully proved himself a fighter. He was still in a very fragile state and doctors found that a respiratory arrest was causing the cardiac arrests. After further tests, the little boy was diagnosed with an extremely rare genetic condition SMARD1 (Spinal Muscular Atrophy with respiratory distress), which can cause muscle weakness, respiratory failure and paralysis of the diaphragm.  

Due to the complexity of his condition, it was feared Sully might not make it through. Despite dedicated efforts from expert clinicians, Sully was unable to cope without the ventilator, and his family came to accept that he would need to use it forever. Sully’s family continued to believe in him, and doctors were able to perform a tracheostomy a month before his first birthday, helping him to breathe.     

Sully spent a total of 14 months in our hospital’s intensive care unit, and it was very uncertain whether he’d ever be able to go home. But thanks to the unwavering commitment and devotion of his family, and the support of his medical care team, Sully is now back at home with his two older brothers.    

Sully (centre) spent 14 months in our Paediatric Intensive Care Unit.

Sully still requires round the clock nursing care, with a dedicated nursing team and both his parents trained to support him. While Sully’s condition is life limiting and getting out and about can be extremely complex, Muhammed and Afshana are determined to help their son live the best life possible, making wonderful memories together as a family.    

Inspired by Sully’s care, Afshana’s family encouraged her to share his story with their wider community of family and friends, calling for donations to help support and say thank you to our hospital’s PICU. Muhammed and Afshana were utterly overwhelmed by the response, with wider family, friends and colleagues stepping up to give generously, and raising £9,000 for very sick children like Sully.   

The family raised over £9,000 for our Paediatric Intensive Care Unit (PICU

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.” 

“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.”   

Annie Eytle, Head of Public Fundraising at Birmingham Children’s Hospital Charity, said: “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.”