After a normal pregnancy with minimal complications, Maley Parker Coleman was born on April 15, 2014, with an extensive birthmark (port wine stain) that covers a large part of her head, face, and scalp. Until Maley was four months old, her only “symptom” was her birthmark; however, on September 3, 2014, our fears became reality, as Maley suffered her first seizure. She would go on to experience four more seizures in five days. The seizures, along with MRIs and numerous other tests, confirmed Maley as having Sturge-Weber Syndrome.
Seizures are the number one symptom of SWS, which is a disorder characterized by a congenital facial birthmark and neurological abnormalities. Other symptoms associated with SWS can include eye, endocrine and organ irregularities, as well as developmental disabilities. SWS affects 1 in 40,000, and there are less than 200,000 documented cases worldwide, which means Maley is extremely special! Although medications are given to keep her seizures at bay, the recurrence of seizures throughout her lifetime are possible, if not expected. Triggers for seizures can include teething, illness, sleep deprivation, or even change in routine.
While I could write a book about the things I have learned since Maley, I will try to make it brief. I never in a BAZILLION years would have asked God to give us a baby with a large facial birthmark or Sturge Weber Syndrome. I never would have asked for a child with seizures or a child who could have potential delays, physical and/or mental. That being said, I am SO thankful that God’s ways are perfect and His plan impeccable! God gave us Maley to teach us so many things. He gave her to us to show us the things that matter in life and the things that don’t. He gave her to us to show us true love and true beauty. He gave us Maley to show us the importance of family and the importance of friends. Most importantly, through Maley’s diagnosis and the trails we have faced, God has shown Taylor and me that He doesn’t make mistakes! He works ALL things out for the good of His people. This means that even what looks to us as “bad,” He uses for His glory, and He uses these things to grow us stronger and closer to Him. While I know our journey with Maley will not be easy, I do know that one day, either here on Earth or in Glory, I will be able to look back and thank God for Sturge Weber. He knows what He’s doing, and He’s never failed before. For those reasons, I can’t question Him or worry He’s made a mistake! Maley is “fearfully and wonderfully made.” She is precious in God’s sight, and He gave her us to bring Him glory. Thank you, Jesus, for our PERFECT gift, Maley Parker Coleman.
“I know Who goes before me. I know Who stands behind. The God of angel armies is always by my side. The One Who reigns forever. He is a friend of mine. The God of angel armies is always by my side.”
Because of Maley’s condition, we have looked in to getting a Seizure Assistance Dog from 4 Paws for Ability, located in Xenia, Ohio.
The following information is from the 4pawsforability.org website.
4 Paws for Ability has an 80% success rate in their placements of service dogs.
The Seizure Service Dog can do the following:
o Provide a measure of comfort for the child
o Provide a distraction during unpleasant medical procedures, such as blood tests
o Be used during a therapy session to enlist the child’s participation
In addition, children with seizures may be afraid of being alone, sleeping in their own beds, and engaging in activities because they might have a seizure. In these instances, dogs can give the children a little courage while helping them maintain their independence. Above all, service dogs help keep the child safe, and the benefits of having a dog as a companion and friend are priceless.
In addition to providing emotional support in the various medical environments, Seizure Assistance Dogs can bring with them the miracles that arise with every service dog provided to children with any disability. Sometimes the child who has extensive seizures must wear a helmet to protect from falls when playing on the playground, or while playing with the neighborhood kids, or during school recess.
These events could, and often do, lead to isolation. The children who lack understanding of the child’s “difference” from them often avoid the child who experiences seizures. Even young children that do have friends may find themselves left behind by their peers as they get older if the seizures limit their activities or result in cognitive delays.
However, there are few children who don’t like dogs, and the miracles that occur when children with disabilities enter the playgrounds with their service dogs is amazing. The service dog breaks the ice. Children will come to pet the dog, and in doing so there is an opportunity to get to know the child and understand her disability rather than avoiding her.
Seizure Assistance Dogs are true service dogs and are allowed to go everywhere the child goes as long as an adult team member is with them (someone trained to handle the dog for the child). These dogs are task-trained.
Seizure medications often cause behavioral issues, and this skill is a great means of helping your child work though them.
In addition, some seizure medications cause issues with balance and the dogs are trained, if needed, to help the child during these times by walking beside them with a harness they can hold to help stabilize themselves. During the interview and acceptance phase other tasks that may benefit the child may also be identified and trained.
Some of our parents have reported that their children have fewer seizures since their dogs entered their homes. This is believed to be the result of a reduction in the stress level the children have through the comfort they find in their new companions.
Seizure alerting behavior is a naturally occurring behavior in some dogs. It is thought that perhaps 20% of dogs placed with a person who has seizures may naturally alert.
The one thing scientists have been able to come to an agreement on is that the dog smells a chemical body change on the person just prior to and during a seizure. While many believe it is not possible to train seizure alert dogs, here at 4 Paws, we can and do! "
~ 4 Paws for Ability
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