Help Little Bean Get To Duke University
Donation protected
Acelynn (nickname Little Bean) has a rare metabolic disorder called Fructose 1, 6-Bisphosphatase Deficiency. She is lacking fructose bisphosphatase which is the key enzyme in gluconeogenesis. Gluconeogenesis is the process your metabolism uses to break down non-carbohydrate sources and turn them into glucose. Because of this she has extreme episodes of ketotic hypoglycemia and metabolic acidosis. It is also important she eat a diet high in carbohydrates, low in protein and fat, every 1-2 hours in order for her body to maintain a safe blood sugar level.
Acelynn requires very specific treatment in the hospital in order to correct her metabolism during times of stress, ilness, hypoglycemia, vomiting, fasting for any reason etc. The scary part is that if she does not recieve the correct treatment during an episode of ketotic hypoglycemia and metabolic acidosis she is at risk for seizures, brain damage, kidney failure, and even death.
Due to the rarity of fructose 1, 6-bisphosphatase her doctors had mistaken it as being a glycogen storage disease. She was put on a high protein low carbohydrate diet and has recieved improper treatment in the hospital during metabolic episodes. This is why it is so vitaly important that her father and I take her to Duke University to be properly evaluated and be put on a course of action that will give Acelynn a better chance at not only living but also enjoying life. Unfortunately the doctors in Kansas City are not familiar with this rare disorder and the only place that is knowlegable in treating children with fructose 1, 6 bisphosphatase deficiency is Duke. But we are happy to say that Duke has agreed to see Acelynn!!
Acelynn's father John and I are not in a position to be able to financially afford a trip half way across the country. Which is why we are asking for donations on her behalf to help us fund this trip to Duke University in North Carolina.
So far this brave 3 year old has had to endure multiple hospitalizations, a diagnostic fast, a growth hormone stim test, a liver biopsy, and countless pokes and prods for blood samples.
The last metabolic episode/emergency she had, when she was getting an IV line put in her tiny little hand, she could clearly see how upset for her I was even despite my best efforts in trying to smile and hide it. She looked at me and said "It's okay Mommy. I'll be brave." Tears flooded my eyes and even do so now while I am typing this. There is something so special, something a little different, almost like a view through a looking glass that is a little more clear and well adjusted that is given to children that have to endure a journey down a difficult path that few others will ever walk on.
This past year of her life has been filled with so many hospitaizations, painful and even dangerous procedures, doctors appointments upon doctors appointments, disappointments from not being able to do what other healthy kids her age can. So, while she is in NC seeing more doctors and having to endure more procedures, I am also wanting to reward her bravery through this entire process, with what I know is a personal dream of hers, and that is to spend a day at the beach. While we are in Durham North Carolina at Duke University we will also take a short detour to Myrtle Beach and let her be a care free 3 year old for a day by putting her toes in the warm sand, build a sand castle, hunt for sea shells, swim in the warm salty water. Everyday that we have to spend with her is an absolute gift never to be taken forgranted.
Your donation will help Acelynn to have a better quality of life through being able to recieve the appropriate treatment plan for her disorder. Asking for help is never an easy task, and albeit a humbling one, I am willing to do it for the well being of my daughter. So thank you to all those in advance that have not only read what I fear may be the longest description on gofundme lol but have also made a contribution in support of Acelynn's trip to Duke University. Your contributions will help fund air fare, medical expenses incurred at Duke not covered by insurance, car rental, meals, hotel, gas, but most important a fighting chance for Acelynn which is priceless and appreciated beyond measure.
Acelynn requires very specific treatment in the hospital in order to correct her metabolism during times of stress, ilness, hypoglycemia, vomiting, fasting for any reason etc. The scary part is that if she does not recieve the correct treatment during an episode of ketotic hypoglycemia and metabolic acidosis she is at risk for seizures, brain damage, kidney failure, and even death.
Due to the rarity of fructose 1, 6-bisphosphatase her doctors had mistaken it as being a glycogen storage disease. She was put on a high protein low carbohydrate diet and has recieved improper treatment in the hospital during metabolic episodes. This is why it is so vitaly important that her father and I take her to Duke University to be properly evaluated and be put on a course of action that will give Acelynn a better chance at not only living but also enjoying life. Unfortunately the doctors in Kansas City are not familiar with this rare disorder and the only place that is knowlegable in treating children with fructose 1, 6 bisphosphatase deficiency is Duke. But we are happy to say that Duke has agreed to see Acelynn!!
Acelynn's father John and I are not in a position to be able to financially afford a trip half way across the country. Which is why we are asking for donations on her behalf to help us fund this trip to Duke University in North Carolina.
So far this brave 3 year old has had to endure multiple hospitalizations, a diagnostic fast, a growth hormone stim test, a liver biopsy, and countless pokes and prods for blood samples.
The last metabolic episode/emergency she had, when she was getting an IV line put in her tiny little hand, she could clearly see how upset for her I was even despite my best efforts in trying to smile and hide it. She looked at me and said "It's okay Mommy. I'll be brave." Tears flooded my eyes and even do so now while I am typing this. There is something so special, something a little different, almost like a view through a looking glass that is a little more clear and well adjusted that is given to children that have to endure a journey down a difficult path that few others will ever walk on.
This past year of her life has been filled with so many hospitaizations, painful and even dangerous procedures, doctors appointments upon doctors appointments, disappointments from not being able to do what other healthy kids her age can. So, while she is in NC seeing more doctors and having to endure more procedures, I am also wanting to reward her bravery through this entire process, with what I know is a personal dream of hers, and that is to spend a day at the beach. While we are in Durham North Carolina at Duke University we will also take a short detour to Myrtle Beach and let her be a care free 3 year old for a day by putting her toes in the warm sand, build a sand castle, hunt for sea shells, swim in the warm salty water. Everyday that we have to spend with her is an absolute gift never to be taken forgranted.
Your donation will help Acelynn to have a better quality of life through being able to recieve the appropriate treatment plan for her disorder. Asking for help is never an easy task, and albeit a humbling one, I am willing to do it for the well being of my daughter. So thank you to all those in advance that have not only read what I fear may be the longest description on gofundme lol but have also made a contribution in support of Acelynn's trip to Duke University. Your contributions will help fund air fare, medical expenses incurred at Duke not covered by insurance, car rental, meals, hotel, gas, but most important a fighting chance for Acelynn which is priceless and appreciated beyond measure.
Organizer
Johnny Graham
Organizer
Olathe, KS
