Lindsey Glorioso wrote -
"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. Sad to say, our Mia was diagnosed with Trisomy 18, also known 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."
We want to raise $10,000! $5,000 will go to Mia for medical expenses and an account for her memorial and $5,000 will go to the Trisomy 18 Foundation.
HOW YOU CAN GET INVOLVED
DONATE! If you are in the Cleveland, OH area, you can donate by going to any Fifth-Third Bank and making a donation to the Benefit Account for Mia Nalany. You can also contact firstname.lastname@example.org for information on our fundraiser dinner scheduled for June 25, 2011 If you are outside of Cleveland, please contact us at email@example.com for more information on how you can help Mia and her family!
PARTICIPATE! Join our team here on Crowdrise and help us spread the word! If you're in the Cleveland area and would like to pass out flyers or pamphlets, get in touch with us via Facebook "Support Fundraiser for Mia Nalani" or on Twitter as "mianalanifund".
SPREAD THE WORD! Please join our team here on Crowdrise and help us spread the word about Mia and about Trisomy 18! It's so easy and yet it could do a world of good! You can also join us on Facebook!
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.
“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" or on Twitter at "mianalanifund".