Request from a USW Member in Ohio
A request was made and granted to put this story about his daughter Sophia from Joseph Hicks on the website. Joe is a United Steelworker member at Local 1104 in Elyria, Ohio and Sophia suffers from Dandy - Walker Syndrome.
Here is the most of the letter submitted by Joseph with a few minor edits.
You may go to these websites to help Joe and his family - Sophia’s Fundraiser Site, Walker Gait Trainer.
Dear brothers and sisters,
My name is Joseph Hicks. My wife, Megan, and I are writing you on behalf of our 19 month old daughter, Sophia.
This bundle of joy was born March 28th, 2013.
Sophia suffers from a disorder known as Dandy - Walker Syndrome (DWS). This disorder is neurological, and affects the cerebellum. In most children born with this, that part of the brain is non-existent, or not fully formed. This inhibits their ability to function- severely lacking fine and gross motor skills. She is almost 2 years old and cannot talk, walk or even crawl yet. She tries hard every day and smiles. She lacks the balance and coordination to do so, and her back is curved.
Sophia's condition also stems out a number of other ailments; such as: ptosis and nystagmus (eye disorders- she has had 2 operations on both eyes for), seizures (which she's on meds for), a hole in the heart (she's had 2 echo grams for, and will need surgery in the near future), severe scoliosis (back surgery in the future), the list goes on.
Because of the number of problems, Megan has to take Sophia to appointments all the time - sometimes it seems like every day. She goes to Pediatrician, Ophthalmologists, Geneticists, Neurologists, Orthopedics that list goes on as well! She has physical, occupational, and speech therapy ... each an hour long, back to back, for a total of 3 hours of therapy on Wednesdays. It seems like a long time, but Sophie (Sophia) does great! She actually needs more professional therapy, but each visit is a copay of $50, out of pocket- after insurance pays their share. Also, she is only allowed (by ins.) to have a set number of therapy sessions per year, after that limit is reached- we have to pay the whole amount, if we wish to continue. She runs out of sessions 3-4 months before years end. So my wife tries to do as much with her stretching and therapy At home as she can. There is equipment that is used to help her with walking and standing, we would love to have it - it's called a walker/ gait trainer ... but those run thousands of dollars and insurance does not cover it.
Sophia is so beautiful, our li’ princess- we want give her the best quality of life we can ... and pray every day for her.
Because of the 24 hour care needed for Sophia, Megan cannot work. I work swing shifts; 1st, 2nd, 3rd, then rotate back every week! Sometimes 12 hour shifts! I try to pay the bills, and clean and everything else I can do around the house – because, bless Megan’s heart, she is very busy as well! This ends up making us both exhausted and still we try to do things to make extra money to pay for the operations, copays, medicines, medical equipment that will help Sophia.
We've tried selling things, I've done lawn work, shoveled snow, etc. It feels like there are no days off - LOL - those ARE my days off! Even tried putting together an online fundraiser, but it hasn't been very successful. We just lack the knowledge. We don’t know enough people to get the exposure necessary for that to work.
As you can see, we need help. You can ask my wife. It is not like me to ask for help. I guess it's a pride thing. But, when I look into that precious little girl's eyes, and see my beautiful daughter smile, I know that I have to set that pride aside- and do everything I can to help her and make her be happy!
I'm not asking for a handout or anything. I just ask, please - find it in your hearts to maybe post Sophia’s fundraiser site and her story in print, on your website, maybe your Facebook page, anything that will help gain exposure - anything that can bring traffic to those sites. This will help bring awareness to DWS, which affects 1 in 30,000 births. It can help bring people that want to help Sophia. By donating money to help with bills, donate time or resources that can help, maybe anyone with some of the medical equipment we seek, etc.
It would mean the world to our family.
Sophia, Megan and I would be forever indebted to you and would be more grateful than you could imagine! It is something mommy and daddy will tell her (how fantastic our union brothers and sisters are! ) and she will remember for the rest of her life!
I hope you don't mind the fact that this letter is so long. I do appreciate you taking the time to read it. It means a lot to Sophia, my wife and I. My purpose of writing to you today is, we are seeking help for medical costs, equipment for Sophie, and pretty much any assistance or guidance you could help us with - all would be greatly appreciated! Thank you, from the bottoms of our hearts and God bless you and your families!
I love you guys! I just wanted to take a second to let you guys know how awesome I think you are. I mentioned before that I work swing shifts, every week I rotate. When I go to work, I leave the radio off and pray, talk to God if you will. I thank him for all the blessings and miracles in my life, mainly my beautiful daughter Sophia, and ask him for help that we need. I ask him to help those less fortunate and look after those who need guidance. I feel as though he pointed me in your direction.
Thank you guys! You all are magnificent, I want tell you thanks for always bringing a smile to my face. If there is anything at all you can do to help my daughter Sophia, it would mean the world to her mommy and daddy and we would forever be grateful!
I will leave you guys some pics of Sophie, and family and all our contact information I can think of- including her fundraisers, for you to get a hold of us for anything - comments, questions, to say hello and see how Sophia is doing! Would love to talk to you guys sometime, call anytime! You guys are great! Thank you!
Megan- 440.258.0156
Joe- 440.258.5692
joe_hix@hotmail.com
Joseph Hicks
212 Winthrop Drive
Elyria, Ohio 44035