Our Story
We have 4 beautiful children. From oldest to youngest: Reslan, Ryan and our wonderful twins Isla (pronounced eye-la) and Kizer.
The first three of our children are suffering from Zellweger’s disease. It is a fatal illness that causes the child to deteriorate slowly, losing their vision, hearing, ability to move, eat and breath.
There is no cure for Zellweger’s disease, so for 11 years we’ve been on a journey to find and help fund medical research that can stop the deterioration and even reverse the brain damage caused by the disease.
Our Kids
Reslan
Unfortunately, Reslan was misdiagnosed with a non-degenerative disease at birth (cerebral palsy).
We decided to fund medical research for cerebral palsy and dedicate the first four years of his life to him so we can help him get stronger before having our second child.
Reslan is a strong child, and his strength has improved during that time.
Ryan
Ryan was born when Reslan was 5 years old. But at the time, Reslan’s health suddenly deteriorated at a very alarming rate and was unable to move, see, lost most of his hearing, was unable to swallow food anymore and soon enough, couldn’t breath without a tracheostomy.
We knew then that he must have been misdiagnosed.
It was right after that time that Ryan started showing the same early symptoms that Reslan showed. So we went to the United States where they were both diagnosed with Zellweger’s disease.
Our First Journey
The first success
We found research taking place in Brussels where if the child would receive part of a liver from a healthy donor (a live liver transplant), then the healthy liver would reduce the number of toxic metabolites in the body and therefore the deterioration should slow down or stop, offering a better quality of life for our angels.
So we started a fundraiser to cover the cost of the operation and thanks to all of you who love Reslan and Ryan, WE DID IT!!
Ryan received part of my liver but unfortunately for Reslan, the doctors decided that he was too fragile to undergo any procedures.
How is Ryan now?
Since the liver transplant, Ryan’s deterioration has decreased dramatically and he has improved in many other areas. His blood tests have shown the toxic metabolites have normalized.
Ryan is 6 years old today (2 years older than when Reslan deteriorated) and he eats by himself, laughs, rolls, loves music, plays and slaps me (Dad) a lot for some reason. 😄
Our Situation
What happened to Reslan?
Sadly, Reslan has now deteriorated to the final stages of the disease.
We are showering him with love and happiness every day…. Reslan keeps smiling for us; happiness is all he knows.
What about Isla and Kizer?
We were told that the only way to be sure of having a healthy child would be through an IVF procedure, so we did it and wanted twins, a boy and girl.
Unfortunately, mistakes were made and Isla ended up with the disease leaving Kizer as our only healthy child.
Our Next Goal
How are we doing now?
We have not given up. We are still looking for medical research that can improve and save our children’s lives. Now, we live in Canada and have been talking with many of the best doctors and learning about the exciting work that they’re doing.
All three of my children are on medicinal research and both Ryan and Isla seem to have regained some vision!!
We are getting a lot of help from our wonderful neighbors, healthcare providers and from this wonderful country that has welcomed us.
Our next journey?
We have found multiple new medical researches that seem promising for both regenerating brain damage and stopping the deterioration of our children, and we are now getting ready to launch our next fundraiser where all the money will go towards those institutions.
Once we decide on which researches we want to work with, we will make the announcement and as always update you on what’s happening on our Facebook page.
These medical researches not only help our children, but the thousands of babies who are affected by this terrible disease from all over the world.
Donate
If you’d like to get in contact with us, please email khawasli@gmail.com and we will reply as soon as possible.
Thank-you for being the Brother’s Hope!
How our journey started
The original video from 2015
Because of your generous help in 2015, we were able to proceed with Ryan’s experimental but very successful Live Liver Transplant. If you’d like to see the difference you have made, please look at Ryan and Reslan’s comparative states in 2015.
The original successful campaign, thanks to donors like you!
