Sample Image

Our Story

Alyssa is 15 years old, she was diagnosed with Cystic Fibrosis at age 6 mos.  She was later diagnosed with CF related diabetes at age 11, and CF liver disease at age 12.  CF primarily affects the lungs and digestive system. A defective gene causes a thick sticky buildup of mucus in lungs, pancreas, and other organs.  Alyssa never let CF hold her back. She was very involved in sports, school, and church youth group activities. Playing soccer from the age of 3 until she was sidelined due to her liver disease.  Alyssa needs your help now to get a life saving Liver Transplant.

The Children's Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transp...

Updates

 

It’s been awhile

I haven’t blogged in awhile. Alyssa had a fairly uneventful summer, she was fairly healthy. She spent most of her summer running, training in the hope that she could run cross country for her school this fall. Her grandma spent most of the summer Continue Reading »

Motorcycle winner

The winner of the motorcycle was ticket #115 Patrick Flanagan. If you would like to watch the drawing please visit Liver4lyss on Facebook. Thank You for everyone who bought a ticket,sold a ticket or helped with this fundraiser. A huge thank you to Continue Reading »

Uncertainty

So, Alyssa’s AFB smear came back positive for micro bacterium. The doctors aren’t sure yet what they are going to try. This is the same infection she was on IV antibiotics for just 5 short weeks ago. The antibiotics make her feel worse than the Continue Reading »

Sick again

and just like that! Her health changes in a heart beat. She woke up this morning with a terrible cough, coughing up nasty mucus. Hoping it passes quickly. She has another appointment on Thursday, but if she continues to get worse I’ll have to take Continue Reading »

Check up

So we drove to Cincinnatti Childrens Hospital today for a check up. Her doctor said everything looks good. All of her lab work was stable. And hopefully she’ll get a new liver in the next 6-9 months. That makes me happy and nervous at the same Continue Reading »

Lots of accomplishments

so in the past week Alyssa has hung out with a friend for the first time in almost 5 months! Definitely an improvement in the way she’s feeling. Unfortunately she also had to cancel plans with another friend after waking up sick, but baby steps. Continue Reading »

Overwhelming generosity

we are surrounded by people who love us. Their support and generosity means so much to us. The 2nd fundraising meeting was yesterday. They have so many wonderful ideas and are working so hard to set up fundraisers when COTA said find a team to Continue Reading »

Finally eating

while Alyssa was on IV antibiotics she wasn’t able to eat. She drank boost and we made smoothies for her. After 48 hours off of IV she is regaining her appetite. Food isn’t making her sick! She actually ate dinner tonight. She lost 30 lbs. Continue Reading »

Progress

Yesterday, after 79 days Alyssa finally got her PICC line removed.  For me that means not having to get up at 2:30 AM to warm her meds to room temperature. For her it means a lot, she can bathe without help, she doesn’t have to get up at 4:30AM Continue Reading »

Fundraising

so we got approval today for our first big fundraiser. We will be doing a walk/run in July. We had to appear in front of our local park board. It was difficult to hold the tears at bay. Luckily it was fairly informal and the board was very nice and Continue Reading »

A typical morning

Alyssa starts her day at 4:30 AM.  First step IV antibiotics, she's hooked up for about an hour.  After that breathing treatments, and airway clearance.  Her treatment consists of three medications delivered seperately by inhalation through a Continue Reading »