Judah May is my only grandson. (I have four delightful granddaughters.) He is really special to me. I love him! When our daughter Beth and her husband Chris found out that Judah had Cystic Fibrosis, my heart broke for him and for his family. We had no idea then (2013).
Five years of treatments, recurring infections, 8 to 10 day hospitalizations have begun to show the devastating reality of this progressive disease. We know that there are hours of daily treatments that must occur every morning and every evening. If Judah is ill, fighting an infection, they increase to three a day.
Many medications must be given and taken on a rigorous schedule. Enzymes must be taken before eating anything. Wicked tasting pills which must be chewed-not swallowed. And yes, this little champion was swallowing pills at age 3 and a half. And because he cannot eat enough in a day to maintain a healthy weight, he was given a g-tube for tube feedings at night…all night…every night.
Then there is the absolute isolation- especially when he is in the hospital. He cannot leave the room at all. Try being four or five years old in a 10 foot by 10 foot room for days on end. And yes, there is the PIC line, which is not only uncomfortable, but necessary whenever he is admitted. If you want to get an idea about living with CF, go see the movie, “Five Feet Apart.”
More isolation! Can this little boy go to spend the night with a friend? No! Can he go to a camp for kids his age? Not likely. And this affects the entire family, as Mom and Dad are pretty much nurses for him and his seven year old sister is learning to do his treatments! So someone has to be where he is all the time!
Every day my heart grieves for this little boy. He is a brave one with all he must endure. Life expectancy has improved over the past 30 years. With research and new treatments available now, Judah has a more positive outlook. Just last year, Judah began a new medication called Orkambi. It is supposed to help with the root issues of CF….But it is one more “pill” to take twice a day. It also requires blood work every three months. Be a five year old enduring that! He does! With little complaint.
Our request is that you help us support the continuing research sponsored by the Cystic Fibrosis Foundation fundraisers like the Great Strides campaign.
Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.
Judah has been admitted to the hospital four times for respiratory "exacerbations". Three of the those times, he stayed in the hospital for at least ten days, being treated with IV antibiotics and increased respiratory therapies. He was admitted once for Gtube placement when he was 18 months old, and once for a partial bowel obstruction. Each time we leave the hospital, something changes for us, and our fight against this disease becomes more real. We try new ways to guard and protect Judah from illness, while still allowing Judah to experience LIFE to the fullest, but we always arrive back at the same place. We are helpless against this disease without the hope that new medications and therapies bring. Science has some so far, but I need it come further, for Judah, and for others with Cystic Fibrosis.
Judah is a lion, the bravest boy I know. This disease is constant suffering in many ways for Judah, but you don't see that in him. You see love, gentleness, life, strength, silliness, and adaptability. He just goes with it. He takes his pills. He does his treatments. He experiences pain and discomfort that he doesn't understand.
On the day of the walk, we take in this disease for all of the worry, pain, heaviness, and sadness it causes and will continue to cause. We take in the unknown future. We stand up to this disease with the support of you, our community. We walk, hoping for a different reality for Judah and those like him. We dare to hope for a cure.
Beth May, Mother of Judah May
Please support me!
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting life-saving research and medical progress. Your gift is 100-percent tax deductible.
Our grandson, Judah has CF.