It took us nearly 10 years to finally see the amazing words PREGNANT flash across the digital pregnancy test and we were beyond thrilled! On October 26, 2010 we welcomed our 1st child, a son, after having gone through numerous tests and in a few cases some very painful procedures to even become pregnant. In the end it was all worth it because we had our miracle baby boy, Parker Ryan Howell.
We left the hospital with him on Friday October 29 to begin our new lives as a family of 3. On November 5 we received a phone call from our family doctor that would forever change our lives.
Parker's Newborn Screen (NBS) came back showing 1 gene mutation for Cystic Fibrosis (CF) and would need further tests at the University of Michigan Hospital in Ann Arbor, MI to give us a definitive answer as to whether our son had this life-shortening disease that slowly clogs the lungs and other organs with thick, sticky mucus making it difficult to breathe and leads to repeated lung infections, GI issues, nasal polyps, reproductive problems, and many other issues.
We were S-C-A-R-E-D!
On November 15,2010 we made our way down to UofM for the tests that Parker had to endure. That same day, we got the answer we did not want -- Parker had Cystic Fibrosis. Those are words that I never thought we'd hear. We'd never even heard of CF before. How could our child, our first born, be diagnosed with this disease? Why him? Why us? Once we got past the shock I started to think, why not? There's nothing that makes us exempt from anything life could throw our way.
Since his diagnosis we've formed our non-profit, Parker Rallies Hope for CF and raised over $50,000.00 that has all been donated to the Cystic Fibrosis Foundation. Our goal is to not just help find a cure for our son, but for all of those living with this disease.
We really did not want to have to start asking for donations to help "us" as our concentration has always been and will always be on raising funds for the Cystic Fibrosis Foundation, but today we are asking for your help.
In addition to Parker's diagnosis with Cystic Fibrosis he has also been diagnosed with Oral Food Aversion (Reluctance, avoidance, or fear of eating, drinking, or accepting sensation in or around the mouth.) and Expressive Speech Delay (though he has made significant progress in this area thanks in part to a wonderful SLP we found in Mt Pleasant.) He also has a Vascular Malformation on his right leg that he sees a pediatric specialist for due to the possibility of needing surgery on it in the near future.
Because of the immense amount of time that Parker (and mom) have had to spend away from home since February we are hurting financially. With all of the travel between hospital stays, extra medical care that is not covered by insurance, food for mom to eat, wear & tear on our vehicle from having travelled so often, as well as child care for our youngest son we desperately need help to stay afloat.
1st Hospital Admit 2/20/14 - 3/6/14 RSV
Intensive Feeding Program 3/16/14 - 5/9/14
2nd Hospital Admit 5/12/14 - 5/26/14 Pneumonia
3rd Hospital Admit 7/17/14-7/19/14 Bowel Blockage
4th Hospital Admit 9/12/14-9/27/14 Rhinovirus
Parker's CURRENT meds as of 11/10/14
We hate having to turn to our friends, family and even complete strangers for help but we know we need it. Greg works 45hrs/wk, but due to Parker's serious medical needs I've not been able to return to work which puts a lot of worry on us. It's hard enough making it in the world today on a 2 paycheck household with kids, but we're trying our best to make it on 1 paycheck. I can't say it's always been easy and it's definitely not fun many days but it is well worth it when you see the smiles on your kids faces.
Thank you for considering helping us. You are allowing us to take a breath and relax during some of the most difficult moments of our lives.
The Howell Family
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