Avery is a silly, sweet, and sassy seven-year-old girl. She resides in Butler, Pennsylvania with her mom, Alisha, her dad, Kevin, and her older sister, Abby (9). Avery loves spending her days cuddling with her family, listening to music, and spending time with her sister, who affectionately dotes on her. Avery is the definition of strength and perseverance; she marches through life with the sweetest smile on her face.
During a routine gender ultrasound, doctors suspected something was going on with Avery and reported that they thought she might have Down syndrome. Alisha was sent for further testing and received an amniocentesis test which revealed that Avery had Trisomy 17p. Trisomy 17 is a rare chromosome disorder and means that the short arm of Avery’s chromosome 17 duplicated and attached to chromosome 15. Avery is the only one in the world with her exact duplication. Alisha shares, “Of course the doctors were very negative about it saying all the bad things that could come about. We said there was no way that we were going to abort her. That wasn’t an option.”
Avery was born on June 18, 2012 after an emergency c-section. She came out screaming, showing her strength from the very beginning. She was immediately taken to the NICU where she remained for three long months. Ever since Avery was born she has been in and out of the hospital. Alisha says, “We are at the hospital about once a month. It can range a minimum of a two day stay. The longest we have stayed at the hospital has been three months. The longest we’ve managed to stay out of the hospital has been for only three months at a time, but that has only happened twice.”
When Avery was born they realized she was unable to swallow. After unsuccessful attempts to feed her, doctors attempted to put a feeding tube in, but Avery kept getting sick and aspirating with the tube so they had to put in a central line when Avery was six months old. She was sent home from that hospital stay with the central line and a feeding tube, but Avery continued to aspirate so the g-tube feedings were stopped and she became TPN dependent. TPN means total parenteral nutrition and it is a method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. Avery remained TPN dependent for three years before they could slowly start feeds back up again. TPN is not a long term solution as there are many complications that can come with being TPN dependent and it can badly damage your liver. Avery’s family, nurses, and doctors were able to work her feeds back up and this past June they were able to get her central line removed. This is a big cause for celebration for Avery. “It’s a pretty huge deal,” Alisha beams. Avery is now getting all of her feed through her g-tube.
Avery is in and out of the hospital so frequently due to her weak immune system. “Any little cold to us is a huge cold to Avery. A cold will put her in the hospital. She’s been in ICU many times and on a ventilator for colds and other respiratory illnesses,” Alisha says. While this can be very scary for Avery and her family, her parents have made sure that Avery is living a fruitful life. They enrolled her in a thriving private school that provides education to children with special needs. Alisha shares, “It’s been a huge thing for her. She has spread her wings and shown her little personality. She has made friends and she’s able to have all of her therapy appointments there.”
Avery’s family continues to push forward. This past summer they took the opportunity, between Avery’s hospital visits, to travel with their girls and to show them beautiful parts of the world. The perseverance and strength that this family encompasses is something we all can learn from. When you meet Avery, you come face to face with strength. You see a sweet, sassy, and silly seven-year-old girl that looks you in the eyes and offers the sweetest of smiles.
Time to get loud shouters!
Throughout the month of October we will be shouting love for Avery and three other Pittsburgh area families. It is a great honor to be able to tell Avery’s story and we hope you will join us in getting to know them.
So click here to shop now where every purchase will go towards the purchase of a handicap accessible van for Avery and her family. You can also start a monthly subscription and shout love for great families each month!
Join us in shouting loud for Avery!