The Spark before the Firestorm

On May 16, 2008, at 8:19 AM, Sara Bisker wrote:

Mrs. Medrano,

Thank you from the bottom of my heart for writing to me about your own experience with a child of Sandhoff disease. I meant no harm to you or your family and apologize for my lack of knowledge in writing that Teresa was the only documented case. I received this information from Mrs. Roberts and her daughter’s doctors. Obviously, and for reasons unknown to me, they either did not know there were other Arizona cases or else chose not to inform me of this.

With that said, it is no excuse for my choice of words and any affect my writing had on you and yours.

My deepest apologies go out to you,

Sara

From: Amber Medrano [mailto:amber.medrano@cox.net]
Sent: Friday, May 16, 2008 2:17 AM
To: sbisker@westvalleyview.com
Cc: publisher@westvalleyview.com; editor@westvalleyview.com; David & Amber Medrano; Dr. Daniel Tinlin; updates@shanesnotebook.com
Subject: Re: "A Mother's Hope" 5/13/08

Sara,

I am reflecting tonight on the tone of my voicemail that I left you earlier this evening on 5/15/08. After much sleeplessness and anxious thought, I have arrived at the conclusion that I do need to apologize to you for any harshness that may have been in my voice at that moment. Please understand, I am a woman in pain. Reading your article (at first glance) was merely salt in my wound. I ask you now to excuse my initial reaction. I do apologize for the tone of my voicemail message. However, I am still compelled to call attention to a grievous error in your report.

In your article, you stated that Mrs. Liahla Robert's daughter, Teresa, was suffering from Sandhoff's disease - a disease so rare that hers was the "only documented case in Arizona". I regret to inform you that this is not a true statement. I implore you to stringently verify your facts before printing a statement such as this. You have no idea how much this sentence has affected me over the past 48 hours - and I am sure that I am not the only one.

My son, Shane Medrano, suffered from Sandhoff's disease. We live in Phoenix. My husband and I are Arizona natives (he was raised in Tolleson, I was raised in Glendale/Peoria). Born in April 2002, Shane was diagnosed in August 2003 and he died in October 2006. He had excellent care and his case was extremely well documented by me. Please know that I have fought every emotion in my being to refrain from bringing all three of the 5 inch notebooks I used to document Shane's journey down to the office of the West Valley View, along with the MRI scans, med sheets, the private duty nursing charts, the hospital records, the pediatrician's file, the Early Intervention sheets, the ALTC and DDD paperwork, the Fowler School District IEP's as well as my own personal research and reports. You see, I kept it all. It is indexed and cross-referenced. It is very neat, organized and thorough. But instead of making a completely raging, hysterical idiot of myself, I will refer you to the less technical online records I've kept for him at http://www.shanesnotebook.com and http://www.alwaysamazingamber.com/?page_id=9. I invite you to dig through the entries on Shane's website in particular, and note the information from November 08, 2004 and July 07, 2005 from the "Mom's Notes" section of the "Journals" menu.

Again, I am trying so hard to take the bite out of my tone. It is with much trembling and bitterness that I write to you tonight. And all I can do is apologize. I am truly sorry. You are not the object of this pain, and I don't mean to project it on to you. It is a heavy burden that I bear.

Please know that this communication with you is not without its sorrow or sympathy for Mrs Roberts and sweet little Teresa. I have been where there are now. I pray that God continues to extend them the little mercies He granted to us during such a terrible time. Donations of a wheel chair and deliveries of extra supplies from nurses doing good deeds were things that we survived on during the times of greatest need. But I think the biggest thing she and her daughter will need is love and strong emotional support. There will be times when Mrs. Roberts will need to fall apart, and strong caring people need to be there to catch her. As for me, I will remember to pray for her every night, and I will do my best to stay updated on her progress. If she is in need of any resources, I make all my hard-earned learning available to her.

To that end: If she needs to talk to doctors that have seen this before, Shane was cared for by the great staff of nurses and doctors at St. Joseph's Hospital and Barrow's Neuro Inst. He had fantastic at-home nursing care from Gentiva Home Healthcare paid through a bevy of private insurances and through Arizona Long-Term Care (ALTC) and the Department of Developmental Disabilities (DDD). He had a wonderful and loving pediatrician in Dr. Daniel Tinlin (I swear he's a saint!). Shane was also impeccably cared for by the amazing husband and wife doctor duo of Mr. Gregory and Cynthia Legris (pediatric pulmonologist). I mean it, these two were like Shane's personal guardian angels!! And Shane had the best customer service from the kindest pharmacist I've ever had the pleasure to meet, Mr. Steven Do (and I believe he's still in Buckeye btw). And there are many more names and faces of professionals that cared for Shane, and I am happy to share them all.

God Bless Mrs. Roberts, little Teresa and their family.

Sincerely,
Amber Medrano

P.S. I meant what I said about contacting the NIH, CDC, or any other national medical research organization to consider investigating the resurfacing of such "rare" genetic neurological disorders such as Sandhoff's in Arizona. Genetically, for a child to be affected, both the father and the mother must carry the Sandhoff gene. It is generally prevalent among specific populations and closed communities where the occurrences of a recessive gene would be multiplied. My husband and I were from entirely different ethnic backgrounds, and in theory, least likely to encounter a match for this recessive gene. I would bet big money that Shane and Teresa are not the only occurrences of Sandhoff's in AZ. They were just lucky enough to have a diagnosis.