"So who is Eden?" I get that question a lot when people first come to my website or meet with me to do a session for the first time. If you don't know me personally then you probably don't know who Eden is. Let me tell you a little bit about this special girl who changed our lives forever. 

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Eden Skyy was my first born child who blessed our lives on an unusually warm late November day in 2001. I was 23 years old and I was very experienced in child care after many years as a professional nanny and working in a home daycare. I wasn't worried about being a mother, I knew I was born to be one after many years of loving other peoples children. I also grew up very close to my own mother and as an adult I have a bond with her that is indescribable.  My mom is my best friend and the person I turn to for everything, so I was excited to have a daughter of my own to have that same relationship with.   For the most part, life with a newborn seemed to be relatively normal with a lot of sleep deprivation, spit up, diaper changes. Rinse and repeat for the first couple of months of her life. 

 

Shortly into early 2002 I started to notice little things that made me question if she was meeting her milestones.  Something seemed off about her but I couldn't quite put my finger on what it was.  She was a very fussy baby and never seemed quite content but I just assumed she was colicky. On top of that she had frequent episodes of projectile vomiting and her head control was not where it should be for being 3 months old. My gut told me something was wrong but I figured I was just over analyzing things and she would eventually catch up. When she was 4 months old I noticed her legs and arms were stiff most of the time and she kept her thumbs tucked in. All of these were symptoms of this unknown disease that we were soon going to learn a whole lot about whether or not we wanted to.  I took her to her pediatrician frequently with my concerns for quite some time.  I'm sure they were tired of seeing me and assumed I was just a a new mom overthinking everything.  I was told she had high muscle tone and that they would monitor it to see if it would change as she grew. Right around that time frame Eden went to stay with her grandparents for a couple of days while we had a weekend getaway up in Northern Maine with friends.  She seemed to get worse while we were gone and when we returned she was arching her back and had straight arms and legs that were stiff as a board. She was doing a lot of crying, spitting up and something was not right at all. I took her in to see her pediatrician very concerned with the changes I was seeing in such a short period of time. Her doctor immediately looked at me with concern on her face and said she suspected she had cerebral palsy but it would need to be confirmed with an MRI and she ordered us to go straight over to have that done. Now I was scared. My worries were not for nothing. CP at that time seemed like the worst possible diagnosis. I was very wrong.  

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We went to see a pediatric neurologist in Scarborough the same day and he did a few tests on her in the office, one of them being a nerve conduction test which she failed miserably. My heart just sank. I knew this was not good.  They sedated her for the MRI and when it was done he sat us down and said he suspected she had Krabbe Leukodystrophy, a genetic terminal illness and that there was not a cure for it and had a death sentence around 18 months. He ordered blood tests for her dad and I (since it is genetic we would carry the gene) and said he should have the results of the MRI and the blood tests within a week. It was March 21st, 2002. He sent us off with no hope, a website to find out more information, and a list of medications to make her comfortable and basically sedate her. He prepared us that she would progressively lose all her abilities including hearing, vision, all motor skills, including the ability to swallow and eventually breathing.  On March 28th, I got a call from her pediatrician confirming the result. I was alone with Eden when I got that call and just fell to the floor. My 4 month old baby was going to die. In an instant our life changed. My sweet little Eden wouldn't have long before this disease completely took over her body. The average age of death was 18 months for infantile Krabbe disease and she was also very symptomatic at 4 months old.  We looked into alternative treatment for her at Duke University in North Carolina and within days we flew down to see if she was a candidate for a stem cell transplant which had promising results if the disease was caught in time to halt progression. By the time we got there the disease had spread to the brain stem and at that point the disease was irreversible. The specialist did not recommend that we proceed with the transplant, but ultimately it was our decision to make.  Our hearts were shattered. This was the hardest decision we would ever have to make. If we did the transplant it would be for us so we could keep her. But her quality of life would have her trapped in this body forever. We chose not to put her through that if the outcome was not favorable. The disease was fast moving and the transplant takes months to take effect.  We left Duke and arrived home and by the time we got home she was already losing her ability to swallow and she was sent into surgery within a week to have a feeding tube placed. 

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For the next 7 months we enjoyed every moment with our daughter. Ron and I took her swimming, camping, BBQ's and spent a lot of time with friends and family. In the fall we took her to Fryeburg Fair and baked cookies. What I didn't know was that was to be our last adventure.  On Halloween 2002 at 11 months and 3 days old shortly after trick or treating as a pumpkin, she decided that it was her time and the fight was over. My sweet girl was no longer suffering and our hearts were broken. 

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After several years of multiple losses, in 2006 we welcomed a healthy son named Ronan who helped restore our broken hearts. Ron and I have since gone our separate ways but Eden now has a little brother named Camren born in 2015 and a brand new baby sister named Violet born in 2019 that I know she is watching over proudly. 

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What I remember the most during that time frame was feeling like I needed to take a 1000 photos a day knowing one day I would only have those and my memories left. It became an obsession and so important to me to have those. I now strive to create beautiful memories for my clients and I hope my daughter is proud of me. So each and every photo I take has a little Touch Of Eden in them, she is my inspiration in everything that I do. 

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To learn more about Krabbe Disease please visit:

https://www.huntershope.org/

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