It has been a long time since I have posted an update. Figured I should write something. For those who are not aware, our little boy has a rare genetic disorder (Kleefstra Syndrome) which causes intellectual disability and absent speech among a long list of other symptoms. There is no cure and are no known treatments. With a lot of hard work and expensive therapy, the best we can hope for is improvement. These days progress is slow and the bills are piling up.

Liam will be 6 in October, but we have difficulty doing things most 2-3 year-olds do with ease. He has less than a dozen meaningful sounds (words) but mostly just babbles. Potty training hasn’t gone far and finding diapers has become a challenge. Insurance won’t cover diapers because they are “not medically necessary.” He can’t tell us when he is hungry or thirsty; he can’t tell us when or where he is hurt. He is getting better at pointing to where he hurts, but he can’t tell us when he is sick.

He is a whiz with video games and technology. He downloads his own games and movies on his iPad and his Kindle. He loves to play Minecraft, Minions and Paddington. He figures out how to play these games by himself and has gotten pretty good at them. He skips the easy levels and goes for the harder ones.

We have physical therapy once a week, occupational therapy twice a week and one assistive speech session a week. PT and OT are going well. He has learned how to paint and draw straight lines, he can cut paper with scissors and has learned to feed beads onto a string. He is also learning how to ride a tricycle. He can navigate an obstacle course and walk alone on a balance beam. We are working on his arm strength, although he is a lot better off than most KS kids, he still lacks strength in all of his muscles.

Liam was told he needed an assistive communication device to be able to communicate with others. After fighting with insurance, they agreed to cover all but $800 of the $12,000 device, but have now changed their minds because it is “not medically necessary.” On top of that, they believe he no longer qualifies for proper speech therapy to teach him to talk because he has a device to talk for him.

Despite the restrictions from COVID, we still make pretty regular trips out of state for intensive therapy. The NAPA Center has helped Liam tremendously! They offer a 3-week intensive therapy course and have a speech therapist who actually cares to help Liam learn to talk. She teaches him to use his talker, but she also works on exercises to strengthen the muscles used for speech and is teaching him to make more of the necessary sounds. Insurance initially agreed to cover the first 3-week class, but has since changed their minds and have sent us bills for it all. So we are now left with over $20,000 in bills for therapy.

We’ve also been told Liam doesn’t qualify for any government assistance, such as Medicaid or Social Security because a paramedic makes too much money. But he might qualify if I didn’t work and if I sold my truck.

The one who is hurt the most by all of this is little Liam. Despite it all he is still probably one of the most happy, easy-going and loving people you will ever meet.

runwithliam

www.runwithliam.org