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“Nomi” Magbool, center, has begun a clinical trial to attempt to restore his vision. Here, the family is shown one week after Nomi’s second surgery, already showing minor improvements.
“Nomi” Magbool, center, has begun a clinical trial to attempt to restore his vision. Here, the family is shown one week after Nomi’s second surgery, a...

‘Miracle baby’ enlisted in clinical trial to help cure blindness


Friday, December 20th, 2013
Issue 51, Volume 17.
Bevi Edlund
Staff Writer


Miracle baby Nomann "Nomi" Magbool, 6, who resides in Murrieta, is referred to as this by his parents. Nomi was born with a rare genetic disorder known as Leber’s Congenital Amaurosis, due to a mutation in the gene RPE65, which causes him to be blind. Lebers Congenital Amaurosis is a rare genetic disorder that affects the retina. It is a degenerative disease which over time leads to complete blindness, according to a blog the family has written, "Trying to See the Light."

He has begun a clinical trial to try and restore his vision and his parents started the blog to track the process. The blog will also allow their son to look back on it in the future.

When Nomi was first diagnosed with LCA, his parents were devastated. They didn’t know what it meant for their son.

"Was it debilitating? Will he never have sight again?" His mother, Beenish Magbool recalled. "Needless to say, we were scared."

It was decided early on that they weren’t going to let this diagnosis hold him back. She also said it wasn’t easy to see her son constantly trip and fall.

"We had to be his second pair of eyes. Constantly telling him how many steps to take or when a curb was approaching," his mother said. "I enlisted the help of my eldest son, Raafay, to help me along the way."

Her husband, Basil Magbool, had been on a mission to find a cure. And when he told her about the trial study, she was apprehensive. Although it wasn’t a cure, it would be the next best thing.

"The day we got the call that Nomi was in the study was one of the greatest days of my life. Simply put, we were relieved," she said. "We were so thankful and grateful that our beautiful child was getting a chance to get his eyesight restored."

"As parents, all we ever want is for our children to be happy and healthy," she added.

Her son is her miracle baby because before she became pregnant with him she was shot while traveling abroad, according to their blog. She sustained nerve damage, the lead shrapnel inside of her body, multitudes of medications and strokes.

She and her husband were told by doctors that she might not be able to become pregnant ever again. When she did, she had a high risk pregnancy.

"Both of my sons are gifts from God," Beenish Magbool said. "As cheesy as it may seem, I love them more than life itself. They have given my life a purpose."

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testing facility is located in Philadelphia.

"When we first began the process, Nomi was excited to come to Philly," said his father Basil Magbool. "But once he got here and started all the testing, he would get tired and frustrated."

He also said Nomi doesn’t fully understand what the surgery is.

"They had to trim his eye lashes to prevent infections and he thinks that was the surgery," he said.

Basil Magbool also talked about how his son hates eye drops, medication, and getting his blood drawn, which they have to do every time he is seen.

Even though he has a disability, so far it doesn’t seem to be holding him back, but that also could be because he is young, his father said.

"We hope if this procedure has worked it will increase his independence and such," he said. "We always had the mindset that we would not allow him to use his disability to hold him back."

Even with the disability, his parents want him to live a valuable and productive life.

"I think now that he has had both surgeries, if it works, and if it lasts, the improved vision is just another tool he can use in his life," he also said.

So far, according to their blog, they are seeing minor improvements with their son’s vision.

Since it is a clinical trial, they will have to keep coming back for 14 years, the researchers need to collect data and track the progress.

In school Nomi uses a slant board and special black and white paper for writing. His teachers make sure his worksheets are blown up to a larger size if needed or printed darker in black and white. He also has a desk light if he wants to use it.

His teacher Sarah Caskey said he has come a long way since kindergarten and "has made huge progress the start of this school year, even with the daily obstacles he faces."

She said he is a "strong, motivated and determined boy."

"Not only does Nomi have a huge family support system at school with his big brother and all his cousins, but Nomi has so many friends," Caskey said. "Kids at his age just want to play and Nomi is so much fun."

She said he also likes to tell jokes and play with his friends at recess.

The best piece of advice Basil Magbool can give to other parents going through this experience is to "educate yourself, remain hopeful, pray, and be patient."

You can track Nomi’s progress and read more of his story at nomisjourney.blogspot.com.


 

4 comments

Comment Profile ImageValerie
Comment #1 | Saturday, Dec 21, 2013 at 5:37 pm
That is very sad
Comment Profile Imagemajid
Comment #2 | Tuesday, Jan 14, 2014 at 9:41 am
i hope one day i could do that to my 11 year old daughter.
Comment Profile Imagemansi
Comment #3 | Wednesday, Jan 29, 2014 at 8:13 am
my son is 5year old.is having LCA RPGRIP1...i want to know what r the chances of cure?
Comment Continued : The comment above was written from the same location.
Post Continued
Comment Profile ImageMANSI
Comment #4 | Wednesday, Jan 29, 2014 at 8:14 am
my son is 5year old.is having LCA RPGRIP1...i want to know what r the chances of cure?

Article Comments are contributed by our readers, and do not necessarily reflect the views of The Valley News staff. The name listed as the author for comments cannot be verified; Comment authors are not guaranteed to be who they claim they are.

 

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