Harlow & Nicky’s long journey ahead.

Hi, our names are Cassie and Marissa and we are asking for your help in helping our dear lifelong friend, Nicky. It’s a bit of a long story and to understand it all we have to give you some background.

At the age of 6 months her sweet sweet daughter Harlow was diagnosed with polycystic kidney disease. Polycystic kidney disease is an inherited disease in which clusters of fluid filled cysts form all over the kidneys that can eventually lead to kidney failure. We knew they both a journey ahead of them. But we also knew that Harlow would be strong through it all as she watches and learns how to be strong from her mama.

Fast forward two years, many different tests, different doctors, various symptoms constantly being put off on to her polycystic kidney disease later and Harlow is at a well child check up. While there her pediatrician says all these symptoms aren’t adding up and something is very off. Harlow is immediately referred to different specialty doctors who refer her to other specialists. After various test and doctors it’s determined that Harlow has a Hypothalamic Hamartoma of the Tuber cinereum measuring up to 7 mm. Essentially that means that Harlow has a type of brain tumor that is pushing in her pituitary gland making her body produce an excessive amount of different hormones resulting in Harlow having precocious puberty and her bones and body growing much faster than that should. She’s currently two years old with the bones of a nine year old. This tumor is also causing Harlow to have seizures and many more symptoms/complications.

All of that to say that Harlow now has a much longer and harder road ahead of her now. She will have to undergo numerous treatments, chemotherapy, she has to get regular scheduled hormone injections that are $3,000 each, potentially brain surgery, and so much more. And Nicky is trying to get her seen by doctors that specialize in Hypothalamic Hamartoma’s. There will be lots of travel and missed work for Nicky. Nicky is a single mother working who is an LVN working her butt off to financially provide but with Harlow’s new diagnosis there are a lot of bumps in the road and Nicky will have to take off a lot of work. Marissa and I are asking that you help our dear friend in anyway you can. Help her get her daughter that care she deserves. Thank you!