Tommys Wild Ride
Organized by: Tom Wing
Imagine yourself in a complete moment of joy, with a whole future of possibility laid out before you. Now imagine that in the next moment you hear the words “life-threatening” “genetic-disease”, and “respiratory failure”. Immediately your world is turned upside down.
This is Cystic Fibrosis, and this is Thomas’s Story.
My Grandson Thomas Phelim Wing was born 6/17/15 (3 weeks early) at 6lbs 11 0z. My son, Jonathan Wing, graduated with his Masters from UNH and now works for the Transit Police in Boston as a civilian employee and my daughter in-law, Amal Wing, served 4 years in the United States Marine Corps, deploying for 1 year to Afghanistan. Thomas is also a little brother to a proud big sister; my amazing granddaughter, Olivia, will turn 2 in November.
We are a happy family full of love, hope, and faith in the future. My son and his wife have been blessed with two beautiful children and love them like no other[jw1] . When Thomas was diagnosed it felt as if our world came crashing down in an instant and that was what scared us the most. What happened to our family can happen to anyone at any moment, nothing is guaranteed and many times our vision of the future is not what we expected. We can’t always prepare for what’s ahead no matter how much we wish we could. Staying strong, positive and taking life one step at a time (and fully enjoying that step) is how we will ensure Thomas lives life to the fullest.
The Disease: Cystic fibrosis is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe. People with Cystic fibrosis inherit the defective gene from both their parents, if they only inherit 1 gene then they likely will be a “carrier” of the disease, but do not display any symptoms. This mutated gene causes mucus build-up in the organs (the ones most affected are the lungs and pancreas). In the lungs, the presence of mucus eventually could lead to 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, resulting in weight loss and decreased growth..
Despite the many scary things that could occur to a person with this disease it’s vital to remember that a cure is in the making. Currently, in the U.S 30,000 people are living with CF and almost half of that said population is over the age of 18, which is a great sign. The disease is also being diagnosed at younger ages, most cases are found by the time a child is 2 years of age, this increases the amount of treatment that a person can undergo to maintain and manage symptoms.
While at first glance the reality of the sickness appears hopeless, it’s when we push the doubt aside and find the courage to dig deeper that we can find out what can be done.
In Amal's words:
We have been very luck with Thomas so far, but to fully understand our situation let’s start from the beginning. When Thomas was born I kept saying “he’s so small”, I couldn’t believe such a little baby came from me after having Olivia, who was 9.5 at birth. Everyone told me not to worry every child is different and so after a few days we went home. At 6 days old we went to see his doctor for a normal check-up and he had lost more weight which was a little concerning so we had to go back in to see his pediatrician at 8 days old. Again, he was losing more weight and was just under 6 pounds…this was not normal and they scheduled another appointment, but then that night we received a phone call that Thomas’s Newborn Screening came back “abnormal” for Cystic Fibrosis, but it was “unlikely” that he actually had it.
They thought he was just a carrier of the mutation. After and INCREDIBLY long 4 days we went to UMASS to do a sweat test which is the best and most accurate way to confirm CF. A score of 40 and below means you are negative, a score between 40 and 60 is inconclusive, and a 60 or above is positive… Thomas scored a 97.
Jon and I were completely lost, the internet was no help and everything we read seemed to inform us of the worst possible things that could happen to our son. Our normal and carefree expectations of the future were abandoned when at less than 2 weeks old we were finding out that our baby boy was already fighting for his life.
The realization of what the internet and doctors were telling us brought me to tears. All I could think was that my Thomas was going to struggle, he was never going to be able to have children. I may never dance with him at his wedding, and the worst possible thought that I rarely voiced… We may have to bury our baby someday… I cried for a week straight.
As weeks have passed, our family has a better handle on things and Thomas is continuing to be amazing. We educated ourselves and learned more about CF and have since decided that Thomas is going to live a LONG and NORMAL life. This is our number 1 priority.
My grandson currently takes enzymes before every feeding, in addition to other prescribed vitamins and supplements. Thomas also does breathing and chest physiotherapy treatments twice daily along with an inhaled medication. He is going to have obstacles, some things are going to be a lot harder for him then they are for others. He will always be on medications and enzymes, however, CF will never stop his family from loving and protecting him and it will not keep him from living the life he is meant to live. No limits will ever be set for Olivia or Thomas, no matter what kinds of obstacles they face. If they want to be President, a Ballerina or a Pro NFL Player they will have every ounce of support possible and will be raised to be the best possible person they can be!
CF is a scary disease, it can be mild and barley effect the person, or it can be severe and cut a beautiful life short. We have no way of knowing what Thomas will be like. We will take every day as it comes and do our best to keep him safe and healthy. We will teach him how to take care of himself and ensure that friends and family understand what CF is and what it means; an everyday cold for us means something totally different for him.
Amazingly Jonny and Amal see the silver lining in this to benefit Thomas and others diagnosed with CF. They are fully committed to fundraising to help raise money for the Cystic Fibrosis Foundation because they are confident that one day THERE WILL BE A CURE! Our entire family is dedicated to this cause. All proceeds raised in this fund will go directly to Thomas for medical costs and portions will be donated to the Cystic Fibrosis Foundation. Additionally, next October Amal and Jonny hope to use this money to finance a large sponsored event (masquerade ball, silent auction, dinner etc.) to raise awareness and proceeds for the Cystic Fibrosis Foundation.
Please help us in any way you can, whether it be through donations, or spreading awareness of what CF is. We are so happy to be supported by such an amazing community, The Wing, Forde, McGraw, and Hdayed family would like to thank everyone for taking time out of their day just to read this!
Please, take the time to read Thomas’ and our story. Even just sharing and considering our situation could potentially save our son Thomas’s life and other lives living with CF. Thank you!
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*All information on Cystic Fibrosis was taken from the national website at www.cff.org