Hope for Journee: Your Support Can Change Her Life

Journee is an amazing 2 year old who has been through so much in her short life already. She’s under gone many different surgeries, test and every procedure possible to diagnose her medical condition however her parents have only gotten the same results back saying she’s a mystery. She has had genetics testing done which came back 7 different mishaps all of which they say do not pertain to her condition. She was however put on the geonomic research team for kids in regards to the SPOP gene sequence due to it being such a rare condition and nobody really knowing much about it. Journee was born at 37 weeks after her mom had complications with high blood pressure and several other things. Her cord was wrapped around her neck twice so when she was born it quickly tightened around it. She didn’t immediately cry nor was doing much of anything so they sounded the alarm and within seconds hospital staff swarmed the room and started emergency measures with Journee. What seemed like hours and hours later, mom was handed her baby girl who was perfect as could be! Although things seemed great and her health appeared to be good, Journee was taken from her parents 2 days later and placed into the NICU at the hospital where she was born. She was aspirating on her food and was having a hard time learning the suck swallow breath motion that baby’s learn in utero around the 35th week. This lead to the nurses believing she was in fact not 37 weeks at birth. They say more like 34 weeks. Journee stayed in the NICU for almost 3 very long trying weeks. Being over an hour and a half drive from her home it made things challenging. At 2 months old Journee was admitted to the Children’s hospital 2 hours from home and did another almost 3 weeks at that time. She had unexplained vomiting and was diagnosed with lyrangomalaysia a condition that blocks the flap in your throat from opening causing noisy breathing and other things. This caused Journee to struggle to breath and she was sent in for emergency surgery to open her airways. She was given an ng tube again just like they had in the NICU however her family didn’t realize this would be pretty much permanent after this time. She is now gtube fed since they only allow the ng tube for under a year. Journee has so many different symptoms they are treating her for but no diagnosis on anything. She is undergoing iron infusions now along with many other things that anemia causes and again they can’t figure out why. Her local children’s hospital has been amazing in helping her and being there for every single thing that goes wrong but her family is hoping for more answers from someone or someplace outside the area. They have been in contact with Mayo Clinic and they are more than willing to pick up Journees case and see if they have any more resources however they don’t accept her insurance. The first visit alone would require her parents to pay $5,000 just to walk through the door and be considered for an appt. Then another several hundred would be required at the time of the first visit up to whatever is not covered with the “deposit” money. This is just for the visit and not even factoring in the money it takes to travel that far plus hotels and food prices. They also had several other options for possible appts to review her case around the United States however it again takes a lot of money for that to happen! Her parents are just looking for some answers so they can get Journee on to the right path for a long term treatment plan. After many hospital stays and having to take off work and travel around to many different specialist, money gets tight quick! Not to mention she’s the baby out of 7 kids so anything your heart leads you to donate her family would be so very thankful for! Journee is the most precious little girl who brightens everyone’s day and truly deserves to have the answers she needs! Thanks so much for any little bit your able to give and for those who aren’t able to, please just send prayers for this family. They appreciate all those they can get too! Again, thank you all so much!