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Meet Tallulah!
Tallulah was born in March 2019 - 5 weeks before her due date. We were over the moon and so in love with our tiny 4 pound baby girl. What we thought would be a quick stay in the NICU evolved into a complicated 92 day journey full of tests, blood draws, scares and all the ups and downs you can imagine.
It took a while to pin down, but Tallulah was born with a very rare metabolic genetic condition, causing a slew of issues from hypotonia (low muscle tone) to delayed speech. There could be other issues in the future, mainly related to diet, behavior, speech, scoliosis and muscle tone, but we've been told to "wait and see". This does not sit well with us, and from the start we have fought for Tallulah. She has overcome so many obstacles, most of which doctors didn't expect her too at such a young age.
The therapy circuit is daunting. There are so many types and in so many locations. Vetting out the best of the best takes time, and unfortunately we have to travel to receive it. We also have to travel to see specialists that understand the severity and complexness of her rare genetic disorder. The only doctor in NY who specialized in this has retired.
We have managed to keep up with costs related to Tallulahs therapy, travel for therapy and doctors appointments, accommodations, orthotics and medications but 2020 proved to be a unique year in which we found ourselves scraping the bottom of the barrel. I never want to have to decide between Tallulah and some other basic need we have to meet, which is why we started this page.
All of the money collected here will go into Tallulah's NY Able account, a savings account for children with disabilities that the family can use to reimburse themselves for therapy, doctors, travel, education, basically anything related to bettering the child.
We know it takes a village, and ours has been so wonderful! Every little bit counts as we march into the unknown with our little rare fairy <3.
You can follow her journey HERE !
Tallulah was born in March 2019 - 5 weeks before her due date. We were over the moon and so in love with our tiny 4 pound baby girl. What we thought would be a quick stay in the NICU evolved into a complicated 92 day journey full of tests, blood draws, scares and all the ups and downs you can imagine.
It took a while to pin down, but Tallulah was born with a very rare metabolic genetic condition, causing a slew of issues from hypotonia (low muscle tone) to delayed speech. There could be other issues in the future, mainly related to diet, behavior, speech, scoliosis and muscle tone, but we've been told to "wait and see". This does not sit well with us, and from the start we have fought for Tallulah. She has overcome so many obstacles, most of which doctors didn't expect her too at such a young age.
The therapy circuit is daunting. There are so many types and in so many locations. Vetting out the best of the best takes time, and unfortunately we have to travel to receive it. We also have to travel to see specialists that understand the severity and complexness of her rare genetic disorder. The only doctor in NY who specialized in this has retired.
We have managed to keep up with costs related to Tallulahs therapy, travel for therapy and doctors appointments, accommodations, orthotics and medications but 2020 proved to be a unique year in which we found ourselves scraping the bottom of the barrel. I never want to have to decide between Tallulah and some other basic need we have to meet, which is why we started this page.
All of the money collected here will go into Tallulah's NY Able account, a savings account for children with disabilities that the family can use to reimburse themselves for therapy, doctors, travel, education, basically anything related to bettering the child.
We know it takes a village, and ours has been so wonderful! Every little bit counts as we march into the unknown with our little rare fairy <3.
You can follow her journey HERE !