Hi. My name is Randi. :) I would like to tell you about a little girl I met a few months ago. Her name is Adrianna.
When I first met Adrianna, she was sitting in her crib as I walked into her room. I bent down so that I was on her level and I spoke to her in that 'baby voice' like all adults do when they meet an infant..."Hi sweetheart, how are you today?!" Except the response I received was a very sophisticated "I'm fine today, thanks. How are you?" I couldn't believe my ears. This tiny 3 and a half year old girl, no bigger than a 10-month old infant could speak to me, not only in full sentences, but with such grace and maturity. I instantly fell in love with her.
Adrianna is special. Special in so many ways. You see, Adrianna has a radiance; a light about her, if you will, that shines so bright...even though the cards of life she has been dealt would leave any average person with a light incredibly dim.
This little girl is only three and a half years old but, she has a history littered with medical diagnoses, surgeries, medications, and complications. Adrianna was born with an extremely rare type of dwarfism called 'Cartilage Hair Hypoplasia' (CHH) which affects so few children that the hospital that she has lived in all but 59 weeks of her 3.5 years of life has never had a case like hers before. The condition is mostly contained within the Amish and Finnish communities in which neither of Adrianna's parents are from. Adrianna has recently undergone a bone marrow transplant in hopes to stimulate her immune system since her immune system was running at only 4% prior to the surgery (immune-deficiency is a known complication of CHH).
Adrianna also has a plethora of related conditions including; Hirschprung's Disease, a condition that affects the ability of her colon to work properly; Short-Gut Syndrome, a mal-absorption disorder caused by the surgical removal of a large portion of the bowel due to necrosis; Hydronephrosis, excess fluid in the kidneys causing improper functioning; Toxic Megacolan, which is an acute form of colonic distention characterized by a very dilated colon and distended abdomen; and a congenital heart defect in which she was born with 3 small holes in her heart. Most recently, Adrianna has been diagnosed with pericardial effusion, a condition where there is an excess of fluid surrounding the heart making it more difficult to pump appropriately, non-absorption of her medication, and is showing the first signs of kidney failure.
This little girl has undergone in immense amount of surgeries for everything from spinal taps to a bone-marrow transplant and central line placements/removals to endoscopy procedures. Adrianna also must have a colostomy bag for the rest of her life as she will never be able to maintain proper digestion on her own.
At different stages of Adrianna's journey, her mom, Christina was informed that her daughter would only have weeks or months to live. Adrianna has climbed from the depths of hell to survive and is still fighting everyday. Currently, her prognosis is uncertain. Doctors just aren't sure how long she will live but, everyone around Adrianna is trying to make all her time with us as special as it can be....who knows, there are cases out there of people who have lived into their 20's or 30's with CHH. However, most children only live to see their teenage years.
So...how can you help?
Well, Adrianna is a HUGE 'Yo Gabba Gabba' fan! I'm talking....SUPER FAN! She may be itty bitty but she is bordering on obsessed and it is absolutely adorable! Her health has been improving enough that the hospital has been allowing her to go on 'day passes' meaning she gets to leave the hospital for short periods of time for fun events! Adrianna's Mom would love to take her to see the upcoming 'Yo Gabba Gabba' holiday concert on December 29th in Upper Darby, PA but, with a very sick daughter leaving her unable to work, it would not be easy to afford. Adrianna recently received a 'Make-a-Wish' gift. Her wish was to go to a 'Yo Gabba Gabba' live concert. Unfortunately, her health took a turn for the worse and she was unable to attend. Instead, Make-A-Wish sent her on a 'Yo Gabba Gabba' online shopping spree and the maintainers of the Gabba Facebook page wrote on her support page! How cool is that?!
PLEASE help send Adrianna to go see the 'Yo Gabba Gabba' holiday show! If our goal is met, arrangements will be made to provide Adrianna, her Mom, and another adult (for support) with an all-expense paid trip to Upper Darby, PA on December 29th to make Adrianna's dream come true! I am hoping to raise enough money so that the family will not have to concern themselves with transportation, lodging, food, or miscellaneous things. This family already has enough stress - lets provide them with an opportunity and reason to let go, relax a bit, and smile.
You won't regret helping bring a bit of joy and a smile to this little girl's life. I promise.
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