Leah was diagnosed with CF at 4 months after showing signs of the disease like greasy stools, poor growth, and salty tasting skin. She did not have signs of lung involvement initially. Upon diagnosis, she began taking enzymes (to help her body absorb fats), vitamins, antacids, and breathing treatments. Along with the breathing treatments, her parents performed postural drainage twice daily. This included Leah being put in various positions while her parents clapped their hands over her chest and back to clear the thick, sticky mucous from her lungs. Though time consuming, this lifesaving ritual became part of their daily routine. At the age of 2, this routine changed a bit and she started wearing a vibrating vest. This vest “jiggles” while she holds her aerosol treatment and cuts down on time significantly! Good thing since Evan was soon to be born and the “routine” was about to get longer.

Leah is 5 years old and loves everything girly especially Pink, not the singer, the color. To her everything should be pink. From Pinkalicious to pink houses, it’s pink, pink, pink! She wears a pink tutu almost everyday. She enjoys reading books, coloring, and especially playing outside. Even in the middle of the winter, Leah would bundle up and swing on her swing set!

Leah is starting kindergarten in the fall and is very excited about riding the bus (mommy is very scared about this). She absolutely loves preschool and her teacher, Mrs. Feldhaus. In the evenings, She likes to work on activity books…letters, numbers, seek and find, stickers, etc. She’s very eager to learn (if only it could last!). Leah can also be very shy but don’t let that fool you! She can be very loud and crazy when she wants too!

Leah has a BIG heart and would do anything for anyone.

Due to the genetic nature of CF, Evan was tested and diagnosed at birth. This was sad news to learn that both kids would have this disease, but it also meant that Evan could start treatment immediately. He was started on the same treatment regimen that Leah was started on when she was a baby. Treating 2 children with CF is extremely time consuming. Initially, Evan had his postural drainage done manually and Leah used her vest. Evan was always very squirmy with his treatments. He did not like to sit still…ever. Mom & dad were so thankful when he turned 2 and could start the vest. However, insurance wouldn’t pay for another machine (that’s a whole other web-site). Needless to say, the kids have to share one vest. This means everything takes twice as long. Evan is a bit of a stinker and still needs to be supervised at age 3. If he is left alone, machines magically turn off and aerosols end up on the floor.

Evan enjoys playing outside, riding bikes, toy story, and fruit snacks! He is rough and tumble kind of kid. He loves running and jumping and wresting around. Some would say he’s all boy! He’s also got a very soft side. He’s a momma’s boy and he loves to snuggle. He won’t let you leave without a hug and a kiss (unless he’s mad that your leaving, then he might ignore you or hide).

He likes to dance and sing and play along to his favorite shows like Blues Clues, Diego, and Umizoomi. He’s such a great dancer. Whoever said white boys can’t dance? He’s totally got the moves. Evan is quite the comedian too. His favorite thing to say is,”tutti fruiti, like that booti”. If you ever called their house, expect him to say that to you. He thinks he’s hilarious! He is a great kid and wonderful addition to the Sauber family!

Leah and Evan are both thriving and doing well. They are happy and healthy little kids. They see their doctors every two months and have routine tests to make sure they are staying healthy. Their family works very hard to keep them healthy and they put up with a lot more than any kid should have to. They and their families look forward to a day without treatments and medications! Lets help them make CF stand for Cure Found!!!

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