Please Help Baby Lilly June
Donation protected
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! I will never give up that eventually one day my sweet precious Angel will finally come home and see the outside instead of a hospital room. 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 will require 24/7 Care for a long time. Because of being in the hospital so long, I have asked the public for help and prayers. We do not know what will happen once we get home or how we will get home if Lilly needs a medical flight home which is over 30,000 and above. Insurance will not pay for this. I keep my head up and I just keep fighting for my baby to get well and be healthy and happy. I’m asking for everyone to Pray for us and Share Our story.
https://www.gofundme.com/helpbabylillyjune
https://paypal.me/pools/c/80EivK6J8Y
https://www.facebook.com/JuneBell80/posts/1690918307635943
https://www.gofundme.com/helpbabylillyjune
https://paypal.me/pools/c/80EivK6J8Y
https://www.facebook.com/JuneBell80/posts/1690918307635943
Organizer
Sara Berry
Organizer
Tallahassee, FL
