Hi, I am Susie, I am trying to help my daughter (Niki) and son-in-law (Trey) raise money to help cover the cost of travel expenses, food and bills for when they have to miss work to be with my gradaughter (Alexia) when she is admitted in the hospital and has to go on medical appointments. She was born with Megacystis-Microcolon-Intestinal-Hypoperistalsis-Syndrome (MMIHS) and there is currently no cure. Alexia was born June 2nd 2021. She is currently on her 4th week long hospital stay because she stopped breathing and fully coded and Niki had to give her CPR yesterday morning until help arrive......Please keep reading for her full story....Alexia was born 7 weeks early and had to spend 4 weeks in the NICU. Niki went in for an OB appointment and was measuring 3 weeks farther along then she was the week before. Up to this point her pregnancy had been perfect. Her OB set her up for an ultrasound to next day and that is when they noticed the baby had an enlarged kidney and they also tested Niki for leaking amniotic fluid which was positive. That is when they started to prepare her for transfer because hospital #1 is not equipt to deliver babies under 36 weeks safely and out of no where her water broke at hospital #1 she was then transfered to hospital #2 Transfer went good Delivery goes great baby goes to NICU, then Niki's Blood pressure goes very high very fast so she is placed on bedrest and put on IV medication for 24hrs and can not even go see her new born baby. Luckily Trey did make it to hospital #2 and was there for the birth so he was with Alexia and did not leave her side unless one of her grandparents were there. After the 24hr bedrest and IV meds Niki was finally able to see her baby for the 1st time. 2 days later Trey and Niki found out they were going to have to transfer Alexia to another hospital because they had come up with a preliminary diagnosis and they did not have the specialist she needed at hospital #2. So the next day Trey had to say goodbye to his newborn baby and his wife as they left in the ambulance to go over 2 hours away from him because he had to stay and work. Fortunately Niki's grandma was able to be at the hospital with her due to her recently retiring so Niki was not alone. After being at hospital #3 for I believe 4 days they got the official diagnosis of MMIHS which is very rare, only a few hundred confirmed cases in the world. In the past 20 months Alexia has had 9 different procedures/major surgeries that have required her to have general anesthesia, and is currently on her 4th week long hospital stay due to complications. Alexia has to be monitored carefully when she is home due to her microcolon because she doesn't asorb nutrients properly so she has to be on TPN which is ran in a central line that is a tube that has been permanently placed in her arm pit that goes directly into her heart so she has weekly doctor appointments and labs 30 miles from their home. Trey and Niki work opposite shift so one of them is home with her. These kids have not asked for help and due to her medical needs only family babysits. Niki was supposed to start her new job the day she had to do CPR on her baby, so don't think she will be able to for a few day. I can understand not everyone can donate, and this is more about people knowing about MMIHS then the donations so please share. There is not a lot of information about MMIHS so please raise awareness.