While in Las Vegas at the Dive Bar, enjoying everyone’s company, I had the privilege to meet Kegan’s mother, Angie. She was looking at a poster that was done by a friend to get his story out and to help promote a raffle that they are doing for the upcoming medical expenses. Thanks to Matt and Justina with Dice and the wonderful Ms.Gaby, we all did our share of promoting her and her plight. Angie called the next day in awe that total strangers dug deep and contributed without even knowing them. I am glad that our paths crossed and this little guy has my heart. I have been in touch with Angie daily talking about Kegan. He is a energetic three year old that suffers from a rare disease called Pseudotumor Cerebri. It is so rare that his parents, Angie and Dean , are raffling off their 1995 Hd Heritage Softail Custom, to help pay to go to the Mayo Center to seek medical attention for their son, they do have insurance but must pre pay for all of the services needed.
Please take a moment to read Kegan’s story , help if you can and tell a friend. thanks-CS
Kegan’s Story written by Angie Childs
Kegan appears to be a healthy, energetic, 3 year-old boy. And like many his age, he runs as soon as he’s out of his car seat, but Kegan’s activity level is deceiving–sometimes making it difficult to believe that he has Chiari malformation and pseudotumor cerebri. He runs because it’s easier than walking, When he walks it’s very slow and he focuses on the steps. Chiari malformation is a structural abnormality in the cerebellum. The cerebellum extends from the skull, places pressure on both the brain and spine, and impedes the flow of cerebrospinal fluid.Basically the brain fall onto the spinal cord causing paralysis. Pseudotumor cerebri, high intracranial pressure, is usually present in teenage girls who are over weight it is very rarely found in children and Never in boys. The body produces too much spinal fluid and it builds up in the brain forcing it outward into the skull causing extensive damage and death. Both of these are Very Rare. We have also been informed that when Kegan sleeps part of his brain actually shuts down yet produces high ampules.
Kegan has already undergone 22 spinal taps to relieve the pressure, which causes excruciating headaches. We likened his condition to having a 10-pound brain in a skull that houses a nine-pound brain. Possible Pseudotumor Cerebri side effects include swelling of the brain pushing out into the skull.( In his case if his skull had not gave way he would have not survived). He has had 2 small strokes as well Possible Chiari symptoms include headaches caused by coughing or laughing, muscle weakness, eye dysfunction’s, numbness, difficulty swallowing, difficulty articulating words, and loss of consciousness because of lack of blood flow to the brain–symptoms that disrupt daily life
We first noticed something awry when Kegan was 6 months old. His head began to increase rapidly in size to 43 cm, which eventually led to plagiocephaly–flattening of the skull, Macrocephalay –enlarged head, as well as his cranial sutures separating. As Kegan grew, the symptoms worsened."He would scream for hours, reaching for the back of his head, and his eyes were almost always closed. He has a high sensitivity to light "He rarely slept through the night. Our search for someone who was experienced with Psuedotumor Cerebri in children brought us to Dr Kim Manwaring and Children’s Hospital in Phoenix, Az"
Since then, Kegan has undergone surgery to have a lumbar shunt placed Dr. Manwaring has created a special shunt for this type of disease and multiple procedures related to a shunt that drains excess spinal fluid.
"He has high pressure due to too much spinal fluid, It’s like shaking up a pop bottle. It has nowhere to go."
Kegan’s in uncharted territory, There’s no cure. They try to alleviate the symptoms." When I talk to him he just stares at me blankly and then when I repeat myself he has no idea that I’m talking to him. Its like his brain is not processing what I’m saying.
I hate what these kids have to go through. I hate that as a mom I have absolutely no control over my son’s condition and I have to sit back and watch him suffer. As other moms with kids that have medical conditions I know that you are shaking your heads right now because you know exactly what I’m talking about. If this were any other industry and cars failed as much as the medical system…. It would NOT be accepted. We are talking about children who are suffering everyday. I am so tired of people saying "He never complains about the pain" and " he looks so normal". Well I would ask anyone out there to spend 24 hours in my house and see how "normal" he is and to see what the affects of a child being in pain 24 hours a day does to them physically and mentally. Unfortunately for us moms, they are the most comfortable around us and that’s when the gates open and these kids express their pain. For Kegan his pain is usually expressed by violence, yelling, banging his head on the wall or with toys. We were hoping as he got older that things would be easier but they are not. He is now more aware of what is happening to him and he truly feels doomed to a life of pain. There is nothing so terrifying as not being able to heal your child… Kegan tries to maintain the life of a 3-year-old, he goes to school, loves animals, cars, trains, bikes and planes. He is very loving boy who is polite and smart. Kegan melts the hearts of all he meets.
While we do have insurance there are no pediatric neurosurgeons who will touch him in Nevada. Dr. Manwaring has done all that he can. What we are trying to do now is raise money to get him to the Mayo Clinic in Minnesota there is a Dr. Marc Patterson who has agreed to care for him. This is all at our expense we must prepay for all services. We have maxed out all of our resources. It costs $5,000.00 just to set the appointment plus MRIs, Cat scans at $3,000.00 Lab work ect. We must travel and stay in Minnesota for 3-5 days … Then we will find out if they can do surgery to save him. (Which we will also have to pay for.) We are an average family he is a beautiful gift from god. Thank you all for your help and prayers.
Thank You , Angie and Dean Childs 702-812-1676
There has been an account set up for him at Wells Fargo Bank
1-800-869-3557
Kegan Childs account number 7293434150
We are raffling off a Harley-Davidson to help raise money to help cover the costs of the surgery that Kegan has to have. There is going to be a benefit party at Mulligan’s Landing with lots of things planned. There will be something for everyone, kids are allowed in the restaurant so there will be stuff happening in the parking lot from 3pm to dark.
The bike will be given away at Mulligan’s Landing (2851 N. Rancho Rd. Las Vegas, NV). Kegan will draw the winning ticket at the event, on December 20th 2008 at 5PM. You do not need to be present to win the bike. There will be other items given away at the event and you will need to be present to win any of those items. We are receiving new items everyday from merchants in the Las Vegas area.
The Bike was gone through by Henderson Harley-Davidson to make sure it is in perfect running order and everything works correctly. The bike is a 1995 Harley-Davidson Heritage Softail Custom (FLSTC) and is Purple and Black. The bike has over fifty LED lights so it definitely lights up at night at you will be seen. The bike also has so many add-ons that it would take up this whole page to list them all.
They also accept :