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This fundraiser ended on 05/18/12

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A big sister's WISH to raise money for the TRAINING of a seizure-detecting dog for her brother, Gavin Lawrey (up to $15,000). Thank you!


AS OF 2/10/12, a dog named Hershey has been DONATED to Gavin and the Lawrey Family. The dog is currently in Miami being trained to be a service dog. We still need $15,000 to pay for the training of the dog, so please continue to donate, if you can. We are always sending updates, so please make sure you check the "UPDATES" tab for the latest news.

AS OF 1/27/12, GAVIN NOW HAS AN OFFICIAL and FULL DIAGNOSIS of a Mitochondrial Disease. This is complicated and difficult to understand. I have included a detailed letter from Gavin's Mom explaining how Gavin's Mito directly affects him and will affect him in the future.

Gavin is an amazing 4-1/2 year-old boy who melts the hearts of everyone he meets. But, behind those gorgeous blue eyes has been a medical mystery for nearly 3 years. Gavin was just diagnosed in January of 2012 with a Mitochondrial Disease, which is superimposed with multiple types of seizures and a rare neurological condition called Paroxysmal Kinesigenic Dyskinesia (PKD) and is . A spinal tap done in November of 2011 also showed a cerebral folate deficiency (CFD) in the fluid that surrounds Gavin's spine and brain. This is not a diagnosis, but rather another symptom of Gavin's Mitochondrial Disease. It is a treatable symptom. Gavin will likely have to take medication for the rest of his life for this.

Gavin has been through more blood work, diagnostic testing and doctor appointments than most adults could EVER imagine and to Gavin this is all "normal" and he is so strong and inspiring through it all. The money raised through fundraising will go directly to The Gavin Lawrey Trust Fund for medical expenses and for the training of Gavin's seizure alert dog.

I have known Gavin and his family for about 2 years now, and I have seen the debilitating and regressive effects that this condition has taken on him. His speech has regressed, his fine and gross motor skills have regressed and he has lost a considerable amount of weight (he is only 29 pounds), and a few months ago he had a grand mal seizure and was postictal for 7 hours! A normal postical period is about 30 minutes. I was at the hospital with Gavin and his mom during this time period and it was heartbreaking.

Gavin being diagnosed with a Mitochondrial Disease, Paroxysmal Kinesigenic Dyskinesia (PKD) and seizures has been difficult for his entire family, especially his parents, Jeff and Brandi, as well as his 7-year-old sister, Makenzie, but it has also given them the opportunity to be touched by many wonderful people who have stepped up in honor of Gavin!

Although you might not have had the opportunity to meet Gavin and see his smile and love for life... I assure you, if you ever did... he would just melt your heart! He has melted mine in such a way that it has moved me to team of with Gavin's 7 year old sister and try and get fundraising for his medical expenses and to hopefully pay for the training of a seizure-detecting dog. Doing so would be a dream come true for his big sister and entire family.

SPECIAL NOTE FROM MAKENZIE LAWREY, GAVIN'S 7-YEAR-OLD SISTER: "The most important thing that I want is for my brother to get better, but I know that there are a lot more tests that need to be done. I pray every day that the doctors will find an answer as to why Gavin has this condition. My biggest fear is that he won't get better and he will be like this forever. I hope Gavin gets better. I hope the doctors will find an answer soon. I wish that Gavin could have a seizure dog because then my parents will know ahead of time when my brother is going to have a seizure, and it will make me feel a lot better. Thank you for reading my brother's story. I hope that you will want to help him get a seizure dog."

I'm certain most of you have never heard of PKD... and possibly not Mitochondrial disease. I thought I would take a minute to explain it and how it directly affects Gavin’s life.

These conditions have been life altering. The Mitochondrial disease has caused some cognitive and physical regression. Gavin's body has to work twice as hard as normal people to do anything. If he does too much or plays too hard... his body goes into "crash" mode. When he crashes his eyes dialate, he becomes lathargic and week and struggles to do just about anything. He runs high fevers and is easily dehydrated. When his body crashes it usually brings out PKD episodes and seizures.

PKD is a rare neurological condition that causes various types of involuntary and uncontrollable movements. It is completely normal to have as few as one episode a day or as many as 100 episodes a day. I have posted a few video's to give you a small glimpse into what one of these episodes look like. This is the very first time the Lawrey's have shared these video's with anyone other than Dr.'s.

Gavin’s attacks/episodes range from very mild hand tremors to severe full body convulsions. An example of a mild-to-moderate episode would be his hands/arms/shoulders shaking when he is trying to eat, write or do a puzzle. He has very challenging fine motor skills. If it’s mild, he has learned, through weekly Therapy, to work through the tremors and still complete the tasks, where other times he shakes so badly that he can’t get his fork in his mouth to feed himself. An example of a more severe episode is when his whole body convulses to the point where he can barely stand or walk. He has mild/moderate episodes daily, but thankfully the severe episodes are more random and not on a daily basis. Gavin may not be able to stand or walk during a severe episode, but as soon as the episode subsides, Gavin is running and playing as if it never happened. He has taught everyone that a “bad” moment is just a brief time period and the important thing is to move past it so we can be thankful for and enjoy every good moment that Gavin has!

Although there is no “cure,” for Gavin's PKD or Mitochondrial... the Lawreys are doing their best to help Gavin adjust to life and its difficulties. It’s easy to feel swallowed up by the medical bills, the constant therapy, chiropractor, blood draws, hospital admissions, doctor appointments and out of state travel for care, but then people come together in Gavin's honor and remind the people close to him that there is always something to be thankful for! Makenzie and I hope that you might consider being one of the people who will come together in Gavin's honor.

The Lawreys feel truly blessed to have the support of their friends, family and community to walk through this journey with them!

I hope you will take some part... big or small... in helping to make it possible to get Gavin the best care possible. Gavin currently has a neurologist in Fort Myers, one at Miami Children’s Hospital, a neurogenetics specialist at Scottish Rite in Atlanta, an epileptologist at St. Petersburg All Children’s, a movement disorder specialist in Baltimore at Johns Hopkins, a pediatric surgeon, a dermatologist, a gastroenterology doctor. a nutritionist, a pulmonologist along with an OT, PT and speech therapist...all working together to help Gavin live a better life with his condition.

I thank you in advance for your consideration and I hope that you will consider being part of Gavin's journey.

*** IF YOU PREFER to mail a check you may to do so. Make check payable to: The Gavin Lawrey Trust Fund and mail to: 147 SE 19th Ln, Cape Coral FL 33990****
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