Brave boy left unable to eat or breathe and face swollen out of proportion due to disease finds hope with miracle surgery
A boy left unable to eat or breathe and his head swollen out of proportion due to an incurable disease finds hope with life-changing miracle surgery.
Adorable Ryder, of Pittsburgh, Pennsylvania, USA, was diagnosed with lymphatic malformations at 20-weeks – which caused swelling around his face, neck, throat, back and the mediastinum.
Doctors didn’t believe he would survive and after being born five-weeks early by emergency C-section, he needed 20 minutes of CPR and intubation – with a permanent trach fitted less than a week later.
His mum and full-time caregiver, Emily Hamrick, 35, says the condition left his head severely swollen due to the countless cysts that formed and continue to regrow.
After routine procedures to remove his tonsils four-years-ago, he developed pharyngeal stenosis, which caused his throat to tighten and close.
The opening of his throat, which is the size of a pencil eraser, requires regular procedures every six weeks to help him breath, communicate and eat.
To date the brave seven-year-old has undergone a shocking 150 surgical procedures to drain the cysts, remove scar tissue, combat his breathing problems and re-open his throat.
Emily is now fundraising for a pioneering surgery that will allow her son to live without his trach and g-tube, in an operation that would drastically alter his quality of life and could ‘change the face of ENT’.
She said: “We all have a lymphatic system, but Ryder’s never stopped growing, essentially he has lots of little fluid filled sacks.
“We knew something was wrong before he was born from ultrasound and MRI scans, but when he was born his face was a lot larger than the rest of his body.
“Some of the bigger cysts are treatable, some are not, they increase in size frequently, so it’s a condition where we have to focus on being proactive and managing it closely.
“He’s had over 150 surgical procedures to help him breathe, communicate, eat and to keep him alive, there have also been four major debulking sessions.
“His throat opening is not much bigger than a pencil eraser, so he breathes through a trach.
“We’ve been battling the closure of his throat for four years since he developed pharyngeal stenosis and are now trying everything to keep it open.
“The disease has left him with a very large chin area, it looks much better than when he was a baby as his body has continued to grow – sadly it means a lot of people stare at him.
“But he’s great in public, he introduces himself to any person who is looking at him and is never rude.
“Ryder has an infectious personality, so people adore him. They pray with him in the middle of grocery stores and give him things a lot. His personality draws them in.
“It’s amazing to see how people respond. It gives me the confidence in society because despite being different, every around him seems to love him.”
Ryder was born with a specific type of vascular anomaly known as lymphatic malformations – which affects one in 50,000 people worldwide.
Neonatal doctors didn’t believe he would survive for more than a few hours after his birth due to the complications caused by the severity of his case, coaching them on how to prepare for his death and funeral.
Ryder was born via emergency caesarean five weeks early because his face was bleeding so heavily while in the womb.
Emily said: “He was diagnosed via an ultrasound, which they followed with an MRI, all they could tell us was that he had a severe case and that we should prepare ourselves because they didn’t think he’d survive.
“He was born without a heartbeat via emergency C-section, it took 20 minutes of CPR and intubation to keep him alive.
“The lymphatic malformation was so severe affecting his head, face, tongue, throat, back and mediastinum.”
It would be another seven-months before the little boy could be released due to the masses that had caused difficulties for his breathing and eating.
Sclerotherapy has been the main treatment, which sees surgeons drain cysts and remove scar tissue – however due to the nature of the disease the lumps continuously grow back.
Emily said: “He had upwards of 50 sclerotherapy sessions before he could breathe and was stable enough for us to take him home.
“After being told he probably wouldn’t survive birth, nothing has affected me in such a hard way since. I am constantly grateful my son is alive.”
Due to having a facial difference, hearing aids and a trach, Ryder draws the attention of members of the public and classmates, all of whom are curious about his condition.
Emily said: “When he joined kindergarten this year, it was a big step for us all, it was a lot of exposure, so I sent home a letter to all of the kids in his class explaining how similar he is to them.
“I wrote in there, ‘I’m going to be in your class, I look different but like all the same things you do’, it was really well received and the best thing I could have done.”
The Hamrick family are fundraising for lifechanging surgery at the Children’s Hospital of Texas, which after a minimally-invasive surgery could alter his life forever.
She added: “Ryder would be one of the first humans to undergo this surgery and if it works it could change the face of ENT medicine all over the world.
“More importantly this surgery could give Ryder the chance at a life without a trach, feeding tube and surgeries.
“Because of Ryder’s great medical needs we are a one person income making this trip almost impossible for us to do alone.”
You can donate to his treatment at: www.gofundme.com/ryders-road-to-texas