It is a rare disease and one that makes every day a battle, every day unknown and every day full of adventures.
Liam also suffers from conditions related to the MPS. These include: food allergies, an arachnoid cyst in his Right Cerebellopontine Angle Cistern with enlarged space around it, Ataxia, Arthritis, Bilateral Dislocated Hips (with Defective ossification, dysplastic acetabella, & damage to his iliac wings bilaterally), Chronic Regression, finger clinidactyly bilaterally, Developmental Delay, irregular Gait, Hypersensitivity, Hypotonia, Hearing Loss, Osteoponia, Plagiocephaly, Seizures and he is also nonverbal.
So much for such little ones to go through. Fortunately he has a great family and friend support to help get through each event and make every moment count. It has not been an easy road and there has been lots of obstacles to climb in his two years here on Earth. Liam has been poked and prodded his whole life trying to find answers and find out what's wrong; but he is blessed to only have had 1 surgery so far. He had emergency surgery to repair his inlingual and umbilical cord hernias at 4 months old. He was transported from one children's hospital to another that would be able to handle doing this emergency surgery while he was in ICU battling RSV. His surgery was only supposed to take 30-45 minutes but ended up taking almost 3 hours, as they had to fight to safe his left testicle due to all the fluid buildup cutting off the blood flow to it. Luckily it was saved and he was released after being in the hospital for a month.
In the future Liam will have to have hip surgery on both hips in a few weeks time and a total hip replacement if those surgeries don't fix his problems. There will be many more surgeries in the future, but Liam and his family are just taking them one at a time.
Liam's mom described their most frightening and most exciting moment in their journey with MPS so far like this:
The most frightening moment was June 7th, 2013. Liam didn't sleep really at all the night before and he went to bed fine around 9pm but then at 130 he woke up screaming and rubbing his legs. He stopped when I cradled him, but the moment I put him down he would scream. this went on until 830 when he finally let me put him down. Liam then went on to sleep until 3pm ate lunch and went back to bed. He didn't walk/crawl or even attempt to do anything but sit in the chair I put him in and have me hold him. The doctor says that some days are just bad ones. He didn't even want to see him!
Most exciting moment was the first time he said momma. I was blessed to hear him say it countless times for 3 whole months; before he became non-verbal for no known medical reason.
Did you know that MPS is detected by a simple blood or urine test. But it is currently not a test regularly done in pediatric doctor offices. Please at your next doctors appointment ask them to test. Especially if your child has autistic tendencies, developmental delay or is regressing.
There is no cure but through awareness there is hope!
Liam may have a lot going on but at the end of the day he is just a toddler, who wants to play with his cars, balls & watch star trek. He is the happiest little boy you will ever meet and is such a fighter! He fights everyday just to walk and play.
To learn more about and help support Liam and his family you can visit their Facebook Page.
To help provide financial support to the family you can donate through their gofundme page below. The family is currently trying to move from Texas to Florida because their insurance doesn't cover out of state appointments, but also because the doctors that specialize in MPS are located in Florida.
To Learn More About Mucopolysaccharidosis view this link: