Main fundraiser photo

Keeping Kylie on the Move

Donation protected
My daughter Kylie is absolutely heaven sent- she is bright, loving, sassy little firecracker who brightens every room with her smile and will amuse you to no end with her clever insight to her world.
From day 1 she has proven to be a warrior and we have no doubt she is poised to grow up to be an amazing, confident and determined personality. She is currently 4 and 1/2 years old and from the "outside" she is an energetic healthy little lady that enjoys her gymnastics and dance classes (just like her family!) and loves to run after her cousins and play soccer with mom in the back yard. Sadly, her "insides" do not align.

At 4 months old, her doctors began to suspect she had chILD (Childhood Interstitial Lung Disease) - which is an broad term for a number of rare, difficult-to-diagnose lung diseases in young children. Symptoms often include difficult breathing, respiratory distress, low levels of oxygen in the blood (hypoxemia), recurrent pneumonia, failure to thrive, retractions, and crackles heard in the lungs with a stethoscope. Diagnosing specific chILD diseases is difficult and complex, so we had to develop a "wait and see" attitude.

In the years following, however, Kylie's resilience has gotten her through illnesses and several rounds of pneumonia at home without the need for hospitalizations or expected medical treatments for this disease. She has been several doctors' "best patient ever" for years-


going though numerous exams. CAT scans, a bronchoscopy, EKGs and ultrasounds to rule out other diagnoses - with a huge smile and tons of giggles. Nurses and doctors would be in awe of this "sick" child bouncing off the walls in the exam room or marching and dancing in the ER asking "what's everyone doing?" She was always willing to give the doctors a helping hand and the needn't worry if they forgot something - Kylie would be sure to remind them. As you can see in the Halloween picture (age 2) - Doc McStuffins was her hero.


In November 2019, 2 types of pneumonia were too much for her little lungs... After a 7 day stay at UMass Medical Center, Kylie left requiring oxygen at night only. This transition was a lot. Kylie had never felt sick or strained or inconvenienced by this disease and now doctors/nurses, exams, and needle pokes were all terrifying enemies. She did not adjust well, especially at first. There were plenty of nightmares. Her mind was still raring to go and run and play but we had to go to appointments and check oxygen levels constantly throughout the day along with a regimen of daily medications.



In January, things had progressed to where Kylie required oxygen therapy 24/7. This was an even harder transition for her. She would tell me things like "I'm not sick mommy - look I can jump," or "Oh but mommy, the girls in dance will trip on my tube! I can breathe just fine." This had all become a new normal that, for a 4 year old, was very hard to understand.


We hadn't quite gotten used to that new normal when Kylie got sick again this past February.
After a 10 day stay at Boston Children's Hospital and a lung biopsy, we were finally given a definitive diagnoses of NEHI (Neuroendocrine Cell Hyperplasia of Infancy). Children may outgrow symptoms of NEHI, but there is no cure. NEHI was only first classified and described in 2005, and as a result, the cause is poorly understood. Lucky for us, Boston' Children's Hospital is a world leader in pediatric respiratory diseases and she has a wonderful team there, as well as here at UMass in Worcester.

So now, finally having a specific diagnosis, it was confirmed to us that this is now going to be her life. Our life.



But as the saying goes - life goes on -
and as we begin to prepare for Kylie's new future, we're faced with a new set of challenges when it comes to leaving the house. Currently, we have a massive concentrator (that provides her oxygen using air in the room vs. oxygen tanks) that we keep in our bedroom for at night, but it isn't mobile. And during the day, her only option is a 15lb oxygen tank (taller than she is) that I have to follow her with. And, as she told me in no uncertain terms during this year's Easter egg hunt, I often "slow her down."
We can't keep oxygen tanks in hot cars, which takes summer day trips off the table, and traveling for vacations has suddenly become a massive obstacle.


Our best option now, in order for Kylie to regain some of her independence (and resume so much of that normal childhood she can't really participate in yet "thanks corona" ) would be to get her a portable oxygen concentrator. These concentrators are small - only 2-4 lbs - and Kylie would be able to carry/pull it around with her. They're also significantly safer than her tank, as (like her stationary nighttime concentrator) they pull in and purify the air around them. Unfortunately, insurance does not cover these types of portable concentrators, and at $3000-$4000 each, it's a tough cost out of pocket right now.


Which is why we are asking for your help. We understand that this is a difficult time for many people financially, but any support you could give would mean the world to us, and to a little girl who would love to be able to get back to the business of being a rambunctious child again.

Thank you all from the very bottom of our hearts.

Donate

Donations 

  • Darin
    • $20
    • 4 yrs
  • Timothy Peak
    • $50
    • 5 yrs
  • Anonymous
    • $20
    • 5 yrs
  • Anonymous
    • $50
    • 5 yrs
  • Nancy Parker
    • $25
    • 5 yrs
Donate

Organizer

Andrea Peak
Organizer
Worcester, MA

Your easy, powerful, and trusted home for help

  • Easy

    Donate quickly and easily

  • Powerful

    Send help right to the people and causes you care about

  • Trusted

    Your donation is protected by the GoFundMe Giving Guarantee