Help For Baby Lilly June
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We are raising money to help us pay Bill's that are due to being home with my daughter Lilly June who is 9 months old now. I thought by now after her 7 month hospital stay and 98% of her pancreas removed that her disease would be better but because Baby Lilly has such a rare pancreatic disease and the surgery did not work, we will now need to travel out of town more and we still do not have any assistance of any kind. Please find out more about Baby Lilly June's story below. Please Please help us by sharing her story and her disease with everyone you know. Please Help Our Family Even just saying a prayer & sharing this will help. I am hoping that somehow, some way she will get better 100%.
This is the story of a mother who will not give up and a story about amazingly strong miracle Baby! I was told for many many years I would never have children. On August 1st, 2017 I delivered my miracle baby at 26 weeks pregnant. The delivery was extremely traumatic and we were unsure if the baby was going to make it. I welcomed my precious Angel Baby Lilly June a Micro Preemie weighing in at 1 pounds 6 ounces. She is now almost 7 months old. She has had over 8 surgeries including a very recent major surgery from a very rare pancreatic disease associated with Congenital Hyperinsulinsm with a very rare mutation called Glucokinase. Baby Lilly June has fought for her life since Day 1 of being in this world. She’s had numerous blood transfusions, she’s had staff infections, numerous PIC Lines, and several other surgeries to fix issues from being born at 26 weeks gestation. I feel so extremely blessed to have her in my life and I am trying to do everything I can to get her story out to the public. We are originally from Florida but was transferred to Philadelphia Children’s Hospital due to the Fact that The other 2 hospitals Lilly was at had no idea how to manage this rare disease. Not only did she survive being a 1 pounder but by the Grace of God she survived having extreme low blood sugars as low as 10. I have stayed by Lilly’s side since day one. We have been through this almost 7 month journey together. Although I have lost my job and career, I would never take back staying by her side. I want people to know her story and that Children’s Philadelphia Hospital is studying Lilly’s pancreas in hopes that one day another child will not have to go through what Lilly is going through and that they will find a better medication or even a cure. This disease is so rare that they do not have many options for controlling the extreme low blood sugars other than major surgery and two different medications that have bad side effects such as having fluid around the heart or lungs and having intestinal issues. Lilly has tried both medications and on February 17th she had 98% of her pancreas removed. I also have had most of my pancreas and spleen removed but we have each other and We are each other’s Rock! I want to not only get her story out there but give other families hope and encouragement to fight for their children and to NOT GIVE UP! We’ve had a long journey so far but we have a long journey ahead of us. Lilly will need PT and OT several times a week. She will need to see special doctors who are not available in our hometown and are several hours away. We may need to make trips 2 to 3 days a month out of town. Lilly has a GTube to be able to get her formula and Food. She also has a Nisan which prevents her from aspirations but is unable to burp or get air out like a normal baby. So she requires 24/7 Care with continuous feeds even after having 98% of her pancreas removed her blood sugars are still running in the 30s and 40s. Even with continuous feeds she still has low blood sugars and all of the doctors here are baffled. I'm asking and begging for help. We've lost my job and material things but I will refuse to lose my daughter..... my miracle baby who is only 9 months old.
This is the story of a mother who will not give up and a story about amazingly strong miracle Baby! I was told for many many years I would never have children. On August 1st, 2017 I delivered my miracle baby at 26 weeks pregnant. The delivery was extremely traumatic and we were unsure if the baby was going to make it. I welcomed my precious Angel Baby Lilly June a Micro Preemie weighing in at 1 pounds 6 ounces. She is now almost 7 months old. She has had over 8 surgeries including a very recent major surgery from a very rare pancreatic disease associated with Congenital Hyperinsulinsm with a very rare mutation called Glucokinase. Baby Lilly June has fought for her life since Day 1 of being in this world. She’s had numerous blood transfusions, she’s had staff infections, numerous PIC Lines, and several other surgeries to fix issues from being born at 26 weeks gestation. I feel so extremely blessed to have her in my life and I am trying to do everything I can to get her story out to the public. We are originally from Florida but was transferred to Philadelphia Children’s Hospital due to the Fact that The other 2 hospitals Lilly was at had no idea how to manage this rare disease. Not only did she survive being a 1 pounder but by the Grace of God she survived having extreme low blood sugars as low as 10. I have stayed by Lilly’s side since day one. We have been through this almost 7 month journey together. Although I have lost my job and career, I would never take back staying by her side. I want people to know her story and that Children’s Philadelphia Hospital is studying Lilly’s pancreas in hopes that one day another child will not have to go through what Lilly is going through and that they will find a better medication or even a cure. This disease is so rare that they do not have many options for controlling the extreme low blood sugars other than major surgery and two different medications that have bad side effects such as having fluid around the heart or lungs and having intestinal issues. Lilly has tried both medications and on February 17th she had 98% of her pancreas removed. I also have had most of my pancreas and spleen removed but we have each other and We are each other’s Rock! I want to not only get her story out there but give other families hope and encouragement to fight for their children and to NOT GIVE UP! We’ve had a long journey so far but we have a long journey ahead of us. Lilly will need PT and OT several times a week. She will need to see special doctors who are not available in our hometown and are several hours away. We may need to make trips 2 to 3 days a month out of town. Lilly has a GTube to be able to get her formula and Food. She also has a Nisan which prevents her from aspirations but is unable to burp or get air out like a normal baby. So she requires 24/7 Care with continuous feeds even after having 98% of her pancreas removed her blood sugars are still running in the 30s and 40s. Even with continuous feeds she still has low blood sugars and all of the doctors here are baffled. I'm asking and begging for help. We've lost my job and material things but I will refuse to lose my daughter..... my miracle baby who is only 9 months old.
Organizer
Sara Berry
Organizer
Tallahassee, FL
