To the editor:
I sit here today compelled to write to anyone willing to take the time to read about an amazing little girl, who happens to be my niece. Jada Rose was born Oct. 20, 2003, with a list of medical challenges, which any one of these would be a struggle for the strongest individual. Jada was born severely premature, being born only 25 weeks into the pregnancy. Jada is blind and has been diagnosed with cerebral palsy and mental retardation. The bigger issue is that she also has brain damage and this is the cause for many of the overall medical complications for her. She has bravely fought through it all, beating the odds every day.
Jada has enriched and blessed the lives of everyone she has touched, and now, she is in desperate need of major eye surgery. My sister, Jessica and her family are facing a time in their lives that none of us can even in our worst nightmares begin to imagine. Jada’s eyes are dying and need to be removed in order to prevent infections that would go straight to her brain. How horrible, how awful, how devastating you’re probably thinking. Yes, we are all thinking it but we also need to be positive and grateful that there is something they can do to save her life. This is where the devastating turns into the “Thank God, just keep her safe,” for us … the outsiders. But for her parents … I won’t even begin to pretend I know what they’re going through. I know I love them and that I’m there for them but sometimes, especially at a time like this, it just doesn’t feel like enough.
Jessica and Jada’s life consists of pretty much going from appointment to appointment. Jessica herself has Crohn’s disease and has had to have many surgeries due to her flare-ups, plus the overwhelming need to be there for not just Jada but her other two children as well. I could go on and on about how good a team she and her husband make along with their two other children in satisfying Jada’s every need, but this would be way longer than anyone would want to read. I will say that they are amazing parents who are accepting and loving of Jada and they teach others that no matter how significant the labels are that she may carry, no two children, even with the same diagnosis, are the same and that she is a little girl first and foremost.
Only people who are close to them and their family know what their everyday life struggles are … and even though we know what their struggles are, we could never begin to even imagine what they really go through, their fears, their hopes, their love, their strength, we get glimpses of what we may think. But only the two of them along with other families that have precious severely handicapped children know what it’s really like to live with that constant pressure. Life is such a struggle all on its own, and every day they have this extra struggle of how to keep their sweet baby girl healthy.
Jada has been in and out of hospitals, as you can imagine, for all nine years of her life. I wish you could meet her and know her like we do. At first you may pity her and her family’s struggles but after getting to meet her and her family I’m positive you would leave there knowing she is here to inspire us all. She’s been through so much is her short lifetime that there is no way of knowing what that is like. And although there are times when you wonder if she can comprehend everything that’s going on in her world around her, rest assured she does. Jada also has a mic-key button, which is an internal feeding device and recently was supposed to have that operated on because it keeps coming out and Jessica has to rush her to the hospital every time (just a tad bit of what they have to go through). Anyway, when Jessica ventured downstate for the surgery, they didn’t want to put her through another surgery. Jada could hear everything the doctor was saying and as soon as her doctor said he wasn’t going to put her through another surgery, she grinned from ear to ear … she so understands.
As you can imagine, every daily struggle, every doctor’s appointment, every surgery puts a tremendous amount of stress and an even bigger financial burden as they struggle how they will afford the costs of getting her to her next appointment. Due to Jada’s other conditions, they can only have one eye removed at a time to prevent further jeopardizing her health. The surgeries will be performed in Portland, a six-hour drive from her home. Because of this, the out-of-pocket costs can be tremendous even with insurance.
You may think that insurance would cover everything but this definitely isn’t true. They currently do not have a vehicle to accommodate Jada’s wheelchair, and with the need to travel several hours to see Jada’s various specialists, transporting Jada is very difficult. Also, while attending these appointments, it requires they stay in a hotel and along with the cost of fuel to travel and food to eat, they simply are having a hard time to make ends meet.
Jessica and Travis are a very proud and sufficient couple who have never asked for any outside help with the many daily care needs or specialized equipment Jada needs. They have never felt it was anyone else’s responsibility. Jada is blessed with a loving and supportive family including her parents, grandparents, aunts, uncles and cousins. However, the financial need that Travis and Jessica are experiencing is more than we can overcome on our own.
There will be a fundraiser for Jada and we are reaching out to our communities for help. People have always wanted to help as it makes us feel good to give back to a little girl that gives us all so much. So today … this is why I write, in hopes that someone out there will be able to help and feel good about helping such a deserving family!
Thanks for your time and even if you can help with a prayer, please do what you can do so that this little girl and her family don’t have to do this alone. God bless!
Jenny Coon
Caribou
