By Kakie Fitzsimmons

I met Kevin O'Toole over a year ago on Twitter. He is a New York State Trooper, father and activist for a deadly neurological disorder called Adrenoleukodystrophy, (also referred to as ALD). He has been working to use social media as a tool to spread the word about the disease. Back in 2009, Kevin's 8 year old son, Patrick, was diagnosed with this disorder. 

Since that time, the family has learned their youngest son also has ALD. Kevin recently mentioned he would be visiting the Ronald McDonald House here in Minneapolis with Patrick for an MRI to monitor his progress so I offered to bring my son (aka Mateo in our Bur Bur and Friends children's books.) and pay them a visit. 

Patrick is like most boys his age. He has a beautiful smile, a gentle demeanor and a good sense of humor. As a result of ALD he has lost his peripheral vision and is learning how to use a walking cane. In his father I saw this courageous, amazing, loving family man and father who is passionate about getting the word out about this disease. He wants others with similar struggles to know they are not alone. With ALD, symptoms occur between the ages of 4 and 10. Boys develop normally until the onset of symptoms occur and typically rival those of attention deficit disorder before serious neurological involvement becomes apparent. The symptoms progress rapidly and lead to vegetative state within two years, and death anytime thereafter. Adrenocortical insufficiency, Addison's Disease, is seen in 90 percent of the cases of ALD."

According to the ALD Foundation, symptoms affect the brain with demyelination. Demyelination is the stripping away of the fatty coating that keeps nerve pulses confined and maintains the integrity of nerve signals, resulting in neurological deficits, including visual disturbances, auditory discrimination, impaired coordination, dementia, and seizures. Demyelination is an inflammatory response and destroys nerve cells throughout the brain.

I interviewed Kevin below:

1. As a parent with kids with ALD, what keeps you going? 

"What keeps me going, that is a good question. I get told quite often by family members and those that learn of our families experience, 'I don't know how you do it.' To be perfectly honest there are days that I really don't know either, we just, as my grandfather would say, "press on." 

I would have to say that what keeps me going is my children as well as all the families we have come into contact throughout this journey. When I speak of all families, I speak of families of all walks of life that have truly touched our lives in some way regardless of how little or grand."

2. What are some of the most profound things that this process has taught you?

"That one should not ever underestimate themselves or another. Keep your head up, even when everything seems off kilter and derailed in life. If you are still breathing and if you're reading this then you still have life, be grateful for every breath and encourage, be positive for yourself and others. You'd be amazed at what you, your child, your family member or any human upon this planet is capable of going through and doing so with vigor that puts some in awe."

3. How has it affected each person in your family?

"I intend on writing a book about it when time permits. I can tell you that it really has caused me to look at many things differently in relation to observing and taking in the every day things that we so often take for granted.

We have four children, it is our youngest and oldest that have Adrenoleukodystrophy (ALD). Our oldest had it develop into the adolescent onset of ALD that affects the demyelination of the myelin sheath. I don't want to stray too far from the question, so for more on ALD one can visit http://ac4ald.com/for more information or links to other sites.

Our oldest received a Bone Marrow Transplant and his marrow donor was his younger sister. She in our eyes has been a miracle, two fold. She was born 3 months premature at 2 pounds, yet fought through that and a year and a half ago, literally gave her big brother another chance. 

During the transplant our oldest son, Patrick, and myself spend 4 months in Minneapolis for the treatment. It was during this time that our middle son I feel was affected the most, missing myself and Patrick immensely. We've been to Minneapolis three times since the transplant for follow ups and you can tell with our middle son that he is afraid that we'll be here for a long, long time again. 

As far as the rest of our family some just don't realize how intensive, time consuming that things have gotten since we began this journey. This journey, truly will be a life long one and through it all we will remain as strong as we can and hopefully provide others with encouragement through whatever they may encounter. Encouragement can be found in the most unlikely of places, we've experienced it and seen it."

4. What advice do you have for other families facing the same journey?

"Never give up, stay as strong as you can, use the energy and love from family and others to power yourself. Reach out to others, in our case the ALD family or Leukodystrophy family, for support. For them to know they are not alone. 

If one is told there is nothing that can be done, the person who speaks this is wrong in my view. Only when the affected person passes is there nothing that can be done any longer for them in the living state and even after they have gone there is still things that can be done, such as sharing their story with others and spreading awareness."

5. How can people help?

Take some time to learn about Adrenoleukodystrophy and help spread awareness to others with social media and word of mouth. As you know Kakie I have used Twitter, facebook, blogged, developed web pages… the list goes on and even though some can be time consuming (such as teaching my self html code), but I will continue to do so until I can do no more.The simple act of sharing knowledge could save a life and potentially a cure. With ALD the earlier the child is diagnosed with having the genetic link the better the potential for their lives to be relatively normal.

I have a few websites I've developed to bring awareness to ALD and other disorders as well. There are numerous facebook pages and sites with information on them as well, you see a friend supporting one that you never heard about take a look at it, see what it's about and consider sharing what you learn with friends of your own.

I developed a positive thought encouraging type of fan page on facebook that I moderate, providing thoughts of Encouragement, Inspiration, Stimulation. If I, if anyone of us is able to do something positive or provide a little light when someone feels low or in the dark. This world will be that much better off. I even developed my first book based upon this fan page. Other resources are listed below

• Twitter:  http://twitter.com/otoole4info      http://twitter.com/ko2le
• ALD and other disorder awareness: http://otoole4info.com/
• ALD Specific awareness: http://ac4ald.com/

September is leukodystrophy awareness month, please help us spread the word and share your thoughts in conversation below.

Book Covers and other products from the award winning Bur Bur and Friend's children's book series: Bur Bur and Friends is a cast of multicultural kids who help kids cultivate their self-esteem and talents by teaching them about sports, outdoor exploration and active play though their experiences. Bur Bur and Friends characters are based off of real life kids like yours!

This entry was posted on Wednesday, September 1st, 2010 at 8:00 pm and is filed under Community Board. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.