Give Lily A Vacation
Donation protected
** UPDATE ** I have enough Airline Points/Miles and funds to get them there. I could just use some help getting the rental van and lodging! Thanks everyone!
I am raising funds for a friend of mine who's daughter was just diagnosed with Niemann Picks Disease type A, here is what she wrote:
Lilian “Lily” Nichole Connolly Lily was born on March 16, 2020.
Most remember that day as “the day the world shut down”. As for me and my family, we remember that day being one of the most special and important days of our lives! Lily was born just one day shy of her due date. She was 7lbs 5oz of pure perfection! I delivered her and they gave her to me saying “she’s a healthy baby girl”. We went to every wellness visit as scheduled and were told she was thriving and that we had a healthy baby.
Fast forward to November 25, 2020 (the day before Thanksgiving) we were at another scheduled wellness visit, but this one didn’t quite end the same as the others. During her physical exam, her pediatrician noticed that her liver and spleen were enlarged. After months of tests, being poked and prodded, we received a very unfortunate diagnosis of Niemann Picks Disease type A. Lily lacks the enzymes to break down cholesterol and lipids (fats). Without being able to break down cholesterol and lipids, it will just continue to build up in her body around her organs and her brain. Babies that receive this diagnosis typically only live until about 18 months.
We are doing our very best to make the most of the time we have left with her. She’s so happy and full of life, we are just beyond heartbroken. She’s the sweetest little baby and I just cannot picture my life with out her. Lily has 2 older brothers Blake is 8 and Ellis is 6.
We want them to have the opportunity to make some wonderful memories with her and we’re hoping to be able to take our family of 5 to Arizona to spend time with family members that live out there. Unfortunately, at this time, airfare and vehicle rental costs are just too much for us and we need help getting our family of 5 to Arizona. We are so thankful and fortunate to have so many supportive family and friends and strangers in our lives.
I am raising funds for a friend of mine who's daughter was just diagnosed with Niemann Picks Disease type A, here is what she wrote:
Lilian “Lily” Nichole Connolly Lily was born on March 16, 2020.
Most remember that day as “the day the world shut down”. As for me and my family, we remember that day being one of the most special and important days of our lives! Lily was born just one day shy of her due date. She was 7lbs 5oz of pure perfection! I delivered her and they gave her to me saying “she’s a healthy baby girl”. We went to every wellness visit as scheduled and were told she was thriving and that we had a healthy baby.
Fast forward to November 25, 2020 (the day before Thanksgiving) we were at another scheduled wellness visit, but this one didn’t quite end the same as the others. During her physical exam, her pediatrician noticed that her liver and spleen were enlarged. After months of tests, being poked and prodded, we received a very unfortunate diagnosis of Niemann Picks Disease type A. Lily lacks the enzymes to break down cholesterol and lipids (fats). Without being able to break down cholesterol and lipids, it will just continue to build up in her body around her organs and her brain. Babies that receive this diagnosis typically only live until about 18 months.
We are doing our very best to make the most of the time we have left with her. She’s so happy and full of life, we are just beyond heartbroken. She’s the sweetest little baby and I just cannot picture my life with out her. Lily has 2 older brothers Blake is 8 and Ellis is 6.
We want them to have the opportunity to make some wonderful memories with her and we’re hoping to be able to take our family of 5 to Arizona to spend time with family members that live out there. Unfortunately, at this time, airfare and vehicle rental costs are just too much for us and we need help getting our family of 5 to Arizona. We are so thankful and fortunate to have so many supportive family and friends and strangers in our lives.
Organizer and beneficiary
Jessica Sauls
Organizer
Westminster, MD
Lauren Durbin
Beneficiary