We’ve had the pleasure of spending time with Max during the past couple of years. During that time, Max was diagnosed with Cystic Fibrosis (CF). The days since have been both good – and difficult.
This project will provide Max with two days of pulmozyme – one of his very necessary, and expensive medications. It warms our heart to provide Max and his deserving family with a good day.
Thank you for your continued support. We are grateful for each and every one of you, and to be able to do another small act of good.
Below is Max’s story, as told by his parents.
In January of 2013, our whole family came down with a nasty sinus infection. After serious antibiotics, everyone got well except Max. We took him to the doctor again… and again… and again. We were referred to other doctors and time and time again, we were told that our son had asthma and allergies. He was prescribed inhalers and allergy medications and nose sprays… none of which worked.
Over the course of almost two years, we tried so many different things to get him well from different types of antibiotics to chiropractic care to changing his diet to essential oils to a tonsillectomy. Nothing worked. We knew he was sick and we kept fighting, but all the doctors told us he wasn’t sick… he just had allergies.
In August of 2014, after two sleepless nights lying next to Max while he coughed literally all night long, I threw in the towel and took him to Children’s Mercy Hospital Emergency Room. I cried as I told the team of doctors all that we had been going through. Max’s O2 SAT’s were low and he was admitted to the hospital immediately. It was the first time any doctors truly listened to us.
Weeks before, a nutritionist I had spoken with casually mentioned that we should have Max tested for Cystic Fibrosis. When he got admitted to CMH, I asked them to test him. Max spent six days in the hospital fighting Enterovirus D-68. (The outbreak started here in Kansas City and he was one of the first kids to get sick with it.)
While he was in the hospital, he was given the Sweat Chloride test, which is the gold standard for CF testing. His numbers were on the high side of normal and we found out that he had been tested for CF at 18 months old because of a red flag during hernia surgery. The doctors at CMH were happy to consider him CF free based on his sweat results.
After he was released from the hospital, we were sent to the Allergy & Immunology Clinic for follow up. They ran a ridiculous amount of tests… and I requested the genetic testing for Cystic Fibrosis. I wanted to make sure we could rule out CF conclusively as I wasn’t convinced that he didn’t have it.
It took three months for the CF test to come back positive. During that time, Max had sinus surgery and we discovered he had a MRSA sinus infection. He was starting to get well once we got him on the right kind of antibiotics and we thought we had figured out the answer to all of his problems.
And then on a random day in November, I got a phone call from his doctor. The CF test came back positive. This was unexpected and a huge shock… we had been told in October that the test had come back negative, but apparently the first round was “negative” because they only found one mutation. They found the second mutation in the second round of testing.
We’ve learned a lot about Cystic Fibrosis since the day we got that phone call in November. It’s a life-threatening genetic disease that causes thick mucus which clogs up the lungs and causes infection after infection. Lucky for us, Max has a rare mutation, which is less severe. (This is why the sweat test came back negative twice.) Since CF is a genetic disease, we knew there would be a chance that one or both of our daughters would also have it.
Ava and Lia went in to CMH a few weeks ago for sweat testing and genetic testing. We didn’t expect to have results that day, since Max “failed” the sweat test. But I got a phone call from our nurse letting me know that Ava’s sweats were high enough to diagnose her with CF. Lia’s sweats were low, so we are hopeful that she does not CF. Their genetic tests are still pending.
The good news is that Max is doing SO well now that he is getting the proper treatment. His latest culture was clear of MRSA and Psuedomonas and he has been off antibiotics for three entire weeks without symptoms… which is the first time that has happened in two years! Ava had her first clinic visit a couple of weeks ago. She is starting on CF therapies and proper antibiotics, but she is doing well also.
Finding out that two of our three kids have Cystic Fibrosis has forever changed our family. There are new things to worry about and hours-long daily treatments to keep them healthy. And the medical bills and fighting with the insurance has been pretty stressful. But the love and support our family has experienced during this tough time has been incredible. We feel so grateful to have so many people on our side.