As many of you know, our dear friend Maria is going through a LOT right now! She has an insanely brave life story filled with hospital visits, needles, procedures tubes and more! If you are unaware of Maria's story here it is...
Maria Kramer was born on March 29th 2006 and pretty much spent the first year and a half of her life in and out of the UI Children’s Hospitals due to what doctors were describing as "dying spells." By the time she was five months old Maria had coded 5 times and had to have a G-tube, Nissans band, infusion port for emergency med use and tracheotomy in place to prevent these spells from happening again. It was a very hard first couple years for Maria and her family. It took over three years to diagnosis that Maria has a partial deletion of her 17th chromosome which is so rare that she is the only person ever recorded in the history of the world to have a deletion of that origin.
She was able to get her tracheotomy and infusion port removed at the age of three; she still needs her G-tube to eat but is working with Therapists to help her eat by mouth. Because of her chromosome abnormality and her codes Maria has some developmental delays and works with Physical Therapists and Occupational therapist often. Two years ago Maria was officially diagnosed with Pulmonary Hypertension. .
A few weeks ago Maria and her family found out she is no longer responding to her heart medications and/or the oxygen used to help manage her pulmonary hypertension. They have one more medication to try but it is really strong and not usually recommended for children. Unfortunately this is the last option they have to try and prolong her short little life. While this medicine could potentially provide some short term help for Maria, her family has had to come to terms with the fact that her fragile and delicate life will be shortened. Maria has always made her own rules and Doctors have given her no timeline! She has already surpassed Doctors expectations and continues to amaze everyone she knows! Maria began her first treatments on the new medicine Monday, April 27th. So far she has responded very well, no doubt due to her strong will and the power of prayer from all of her friends and family!
Each day is a gift for Maria and her family. I want nothing more than to make sure they can fulfill each of Maria's dreams and wishes, and to help make sure Mike and Genna have a lifetime of memories of Maria to hold on to!
This my friends, is where you come in! Help support trips to the zoo, family vacations, days away from work, trips to the ice cream shop....a potential concert visit to Katy Perry or her all time favorite Justin Beiber, ANYTHING! This is all about Maria and making her smile!
On behalf of Mike, Genna, Maria and Aubrey thank you so much for your support! Continue to keep them in your prayers and always Believe that everyday is a gift from God!
Maria Kramer was born on March 29th 2006 and pretty much spent the first year and a half of her life in and out of the UI Children’s Hospitals due to what doctors were describing as "dying spells." By the time she was five months old Maria had coded 5 times and had to have a G-tube, Nissans band, infusion port for emergency med use and tracheotomy in place to prevent these spells from happening again. It was a very hard first couple years for Maria and her family. It took over three years to diagnosis that Maria has a partial deletion of her 17th chromosome which is so rare that she is the only person ever recorded in the history of the world to have a deletion of that origin.
She was able to get her tracheotomy and infusion port removed at the age of three; she still needs her G-tube to eat but is working with Therapists to help her eat by mouth. Because of her chromosome abnormality and her codes Maria has some developmental delays and works with Physical Therapists and Occupational therapist often. Two years ago Maria was officially diagnosed with Pulmonary Hypertension. .
A few weeks ago Maria and her family found out she is no longer responding to her heart medications and/or the oxygen used to help manage her pulmonary hypertension. They have one more medication to try but it is really strong and not usually recommended for children. Unfortunately this is the last option they have to try and prolong her short little life. While this medicine could potentially provide some short term help for Maria, her family has had to come to terms with the fact that her fragile and delicate life will be shortened. Maria has always made her own rules and Doctors have given her no timeline! She has already surpassed Doctors expectations and continues to amaze everyone she knows! Maria began her first treatments on the new medicine Monday, April 27th. So far she has responded very well, no doubt due to her strong will and the power of prayer from all of her friends and family!
Each day is a gift for Maria and her family. I want nothing more than to make sure they can fulfill each of Maria's dreams and wishes, and to help make sure Mike and Genna have a lifetime of memories of Maria to hold on to!
This my friends, is where you come in! Help support trips to the zoo, family vacations, days away from work, trips to the ice cream shop....a potential concert visit to Katy Perry or her all time favorite Justin Beiber, ANYTHING! This is all about Maria and making her smile!
On behalf of Mike, Genna, Maria and Aubrey thank you so much for your support! Continue to keep them in your prayers and always Believe that everyday is a gift from God!