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Fighting Bigger Battles by Lisa Soeby, Founder of Hope for Hypothalamic Hamartomas April 8, 2013

Posted by mvarlan in Uncategorized.

I sat down to blog several times over the past week – and several topics came to mind. However, it was difficult to focus on a topic because I was locked in a battle with my son’s school over Extended School Year (ESY) services.  For those of you that are not familiar with this term, it is a service that is available over the summer to students with an IEP that demonstrate a loss of knowledge or critical skill over extended school breaks.  This program is designed with individuals like my son in mind.  CJ has had 4 HH surgeries and each has negatively affected his short term memory, retention ability, and slowed his critical thinking skills.  He has received these services for the past 3 summers.  However, after CJ started high school this year, I found that all of the “unwritten” special education rules have changed.  Notice I used quotation marks around “unwritten” because the laws have not changed but the rules of the game seem to have changed.  It has always been a challenge getting services because CJ’s difficulties are not obvious physical ones, and it is easy to say, “He just needs to try harder to remember,” or, “He just isn’t listening,” or, “He isn’t motivated,” or, even better, “It is like he just forgets!”  All of which are untrue, but hard to disprove to a closed mind. In high school, it is like he is just supposed to grow up and move on.

Today, we were notified that, after much discussion and legal proof on my part, that the school was negligent in their handling of the situation; CJ will get ESY services this summer.  However, it all comes at a cost.  Our trust in the school is severely shaken, and CJ feels some members of his IEP Team – adults he had been told were his advocates – basically told him he was not worth teaching over the summer, because he would probably just forget everything.

So why did I decide to blog about this? For one, I knew that so many of you would completely understand what I am saying, and two, I try to find a lesson in everything.  What I took away from this situation is that those of us who fight bigger battles get bigger scars. Did I ask for this confrontation? Absolutely not! But did I have the opportunity to show my son that he means the world to me and that I would go to the ends of the earth to support him? Absolutely!

For so many of us that are blessed with an individual with HH in our lives, whether it is a child, a grandchild, a spouse, or someone we feel responsible for in some way, we will have plenty of battles to fight on their behalf. I just want to encourage you to fight the good fight! It is hard to do day after day, and the battles seem endless sometimes.  But you are making a difference.  CJ now knows that there are people in the world that will support him and there are those who will seek to put him down.

He needs to be able to advocate for himself to the best of his ability, but he knows, without a doubt, that his parents love him and will do whatever it takes to support him. Don’t we all deserve a champion?


Very well said by one of the most compassionate mothers I have ever met.


Maggie Bobrowitz, RN, MBA
Neuroscience Program Coordinator
Barrow Hypothalamic Hamartoma Center at Phoenix Children’s Hospital
Barrow Hypothalamic Hamartoma Center at St. Joseph’s Hospital & Medical Center



1. Tom Smith - April 8, 2013

Thanks for sharing this, Lisa and for your willingness to post it, Maggie. The battles that go on beyond the surgeries and hospital stays get far less attention but are so very taxing…and surmounting them is inspiring. Perry (2.5 yrs) and her new baby brother Whit (3 mos.) send their love and support from Charleston, SC, to CJ and you all. Ellie and I remain grateful to you for your extended hand and heart.

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