Lindsey Glorioso wrote -
“Our Little Angel Mia Nalani” is not an official 501c3 and, thus, cannot accept donations via Crowdrise. We are using this website solely as a means to track our offline donations and generate maximum exposure for such a worthy cause.
If you want to donate, feel free to contact us at mianalanyfundraiser@ yahoo.com.
You can also find us on Facebook under "Support Fundraiser for Mia Nalani"
"On September 5th, 2006 my daughter Mia Nalani was born her birth weight was 5.9 lbs. and she measured less than 16”," says Mia's mom, Lilly. "I can still remember her faint whimper as the doctor’s worked on her for a few minutes after birth. Working in labor and delivery for a few years I knew something was not right but soon after the doctors worked on Mia, she was placed on my chest and I was told that everything was fine…or so they thought.
"On the day of our final discharge we began packing everything to go home, my nurse informed me that they would do a last check on Mia and then we would be ready to go, but a few hours later to my surprise my doctor entered the room along with a cardiologist and gave me the bad news that Mia was not going home with me. Instead she would be transferred to Cleveland Clinic due to a heart murmur that was detected. They believed that further testing should be done to determine what was wrong with her. And so Mia’s story began …
"The next eleven days were the longest days of my life. Mia was transferred to PICU due to her heart decelerating and her oxygen levels being very low. She was tested and tested for every possible disorder or condition. The longest and most excruciating wait was the results for her genetic testing. After an entire week of waiting, the results were finally in. It was then that we learned that Mia’s heart condition was only part of the problem. Sad to say our Mia was diagnosed with Trisomy 18 or Edward’s Syndrome. We were sent home with hospice arrangements since her grim prognosis was that she would not be living past two weeks.
"Four and half years later, our Mia is still here. She has been hospitalized four times. The most recent admission revealed that her heart condition has shifted from mild to severe pulmonary hypertension and it is very likely that she will slowly began to digress as her heart begins to wear down. Mia is too frail to survive surgery so the best thing we can do for her is pray and hope she is with us a little longer."
What does Mia’s future look like?
Currently, Mia is doing better considering her prognosis. She is able to eat without a feeding tube and is breathing without the help of an oxygen machine. Mia was getting physical and occupational therapy in the last months through school which helped improve her head control (she is able to hold her head on her own). Unfortunately, it is unknown how much longer she will be with us. Her recent change with her heart tells us that her heart is slowly deteriorating. More than likely she will begin to show less activity and begin to slow down as her energy decreases. In the meantime we will enjoy the time that we have with her.