Help my Silent Angel, Alisandra, Explore The World!!!

When you put the words ANGEL and FIGHTER together you get ALISANDRA. As a parent, you never want your kids to struggle, you always have best wishes for their future. Well for the first half of Alisandra’s life she was in and out of the hospital since she was 9 months old. As a baby, we noticed loud breathing and as she grew, she started choking with and without feeds. At 9 months, Ali had a swallow study and Doctors found she was silently aspirating, meaning her food was going into her lungs. Ali could not eat by mouth anymore, eating is something she truly enjoys. From 9 months old, it was a downhill battle. Ali started having seizures, central and obstructive sleep apnea (she wears a bi-pap at night) and we decided a G-tube placement would be best. For the first 3 years of Ali’s life, it was a battle with life threatening situations occurring often. It was not until Alisandra was accepted to UCLA’s Undiagnosed Network (A group of Doctors help find diagnosis for those who are undiagnosed) that we finally had a break.

Two months before Alisandra turned 4, UCLA’s UDN diagnosed Alisandra with Rett Syndrome (RS), a neurological development disorder. Rett Syndrome is a Rare Disorder that affects 1 in 10,000 females. It begins to display itself in missed milestones or regression at 6-18 months. RS leads to serve impairments, affecting nearly every aspect of life including ability to speak, walk, eat and breathe easily. Cognitively, RS girls understand far more than they can communicate to us as shown by their bright and attentive eyes and their ability to express varies moods and emotions.) On the spectrum of that disorder, Ali is on the severe end. She is not able to walk, talk, she has respiratory problems and main source of food is by her G-tube. She needs 24 hour care and finding a balance between her needs and raising two other kids things can be difficult. Ali also has a condition called Charcot Marie Tooth (CMT) 1A, a muscle dystrophy disorder that affects her upper and lower extremities.