Katelyn Renee Shumaker

This memorial site is dedicated to my beautiful precious daughter, Katelyn. I am so extremely blessed to have had her in my life! She was an angel who made a difference to all who knew her from the very beginning.

So starts Katelyn’s life story--I was 21-yrs old when I had Katelyn and had always taken good care of myself. I was in great health and my entire pregnancy was normal. Katelyn came about 2-wks early raring to come into this world. Labor and delivery went like clockwork. All of Katelyn’s newborn testing also went well. The doctor said when Katelyn first came out that she was definitely born with attitude! Boy did he hit that one out of the park! But I believe with all of my heart that Katelyn’s attitude and determination is what got her through life.

At her 2-month check up my only concern was that breastfeeding wasn’t working for her and we couldn’t find a formula that agreed with her either. Her pediatrician was a little concerned that she wasn’t developing on schedule but said it wasn’t anything to be alarmed about quite yet. I thought of course its not, how far can a 2-month old really be behind.  For the next 2-months we tried formula after formula and still couldn’t find one that Katelyn could handle and she wasn’t gaining weight. So at her 4-month checkup she still wasn’t reaching any milestones so the pediatrician referred us to our first neurologist.

At about 5-months old we started down the long road of testing with the first test being one that would determine if Katelyn had Down Syndrome. That came back negative and still Katelyn wasn’t developing. So we went on and on with testing and seen numerous doctors from Dayton, Cincinnati, Kentucky, and Indiana. All tests were coming back completely “normal”. We soon became tired of hearing the word “normal” because we knew this was far from normal. Katelyn had her first seizure at 7-months old, she always threw her formula up, couldn’t hold her head up, roll over, or sit up. She never slept and always cried. However, remember all of her testing was “normal”! She had a G-tube put in when she was 18-months old. This is a device that is surgically inserted through the stomach wall directly into the stomach to assist in feeding her. This was supposed to help in her poor weight gain and help the vomiting issue.

At 2 ½-yrs a doctor at Riley Hospital sent us to Atlanta, Georgia to have a muscle biopsy done. He was suspicious she had a rare condition and wanted this to be done in the best place possible with the people who knew the most about it and how to test for it.  This was where we finally did get a true diagnosis, Mitochondrial Complex I Disorder. Mitochondrial Disease results from failure of the mitochondria, which are found in almost every cell in the body. They are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When the mitochondria fail, less and less energy is generated within the cell. When this happens, cell injury and even cell death follow. Then there is an energy shortage within the body and those organs that consume large amounts of energy (such as muscle, brain, and the heart), are then affected. There is no cure for mitochondrial disorders. All you can do is manage symptoms and try to slow down the progression of the disease.

There are so many factors in everyday life that we don’t think twice about or consider an inconvenience but with Katelyn some of these things are life threatening. For instance a bright sunny 80-degree day is a great day for you and me! However Katelyn’s body would start to over heat and spasms/seizures would start to occur and so would start the domino effect. Katelyn’s body had a really hard time regulating its own body temperature so just running back in the house or in the shade was not an answer for her; it would take hours to try to get Katelyn’s body back under control. Her immune system was very low and she was very susceptible to infections. If she got sick it usually meant anywhere from a week to a month in the hospital. Therefore we tried to minimize risks as much as possible. Katelyn received her physical, occupational, and speech therapy in our home. She was in the 2^nd grade and received home instruction from her teachers in our home as well.

By the age of 5 Katelyn also had the diagnoses of asthma, sleep apnea, severe movement disorder, and chronic pancreatitis that were all more than likely in response to the mitochondrial disease.  She could no longer take anything by mouth or by stomach due to chronic recurrent aspiration pneumonia so she had a G/J tube put in. This is the same procedure as the G-tube but it goes all the way into the jejunum. She also aspirated just on her saliva, so breathing and head positioning was a struggle. She had a port placed in her shoulder at age 6 ½.  This allowed for quick and guaranteed access for IVs. Pretty much all of her veins were shot because of numerous hospitalizations and many IVs.

In spite of her limitations I know she lived a full and happy life. She was always full of smiles and giggles! With an abundance amount of careful planning and extra measures she went on several outings and even took a few trips. Her biggest trip was in November of 2006 through Make-A-Wish Foundation. Her wish was to meet Cinderella and see her castle! After all a princess should know a princessJ Make-A-Wish made it all happen plus so much more! We had 1 full week in Florida. We stayed at Give Kids The World Village. What an amazing place!! As soon as Katelyn saw Cinderella her eyes just lit up and the biggest smile ever across her face. That single moment was breathtaking and unforgettable! We tried our best to fit everything we thought she would enjoy in that week. Although it was very busy and tiring she held up like a champ. She was enjoying every minute of it. She experienced so many things that she otherwise would not have gotten to. Everyone treated her like a queen and put her first!

On Sunday, September 23^rd of this year she developed a fever of 104 so I took her to Childrens Medical Center ER. When we arrived there her temperature was over 107. It took us over 2-hrs before we could get it below that and another 7-hrs before it was below 105. That’s when our nightmare really started. Over the next 2 ½-wks everything was up and down. We were all on pins and needles. The doctors would get one thing somewhat under control and something entirely new would develop. This last visit at Childrens was so different, it’s hard to explain. Her body just wasn’t fighting like it usually did and she was pretty lethargic most of the time. The problems she faced this time ranged from pneumonia, pancreatitis, numerous infections throughout her blood and urine, kidney failure, BPs dropping, the list could go on and on. Although the doctors and staff did the absolute best they could it was her time to go and she took her last breath on Wednesday October 10, 2007. She is now free from the body that confined her for so long and at peace. Now she can run and dance and sing with all her heart at Jesus' feet. Still, words can not express how much I miss her, and my arms ache with emptiness and my heart with sadness.

Katelyn taught me that differences do exist in people and not to be afraid or judgmental of them but all we need to do is to be tolerant and more understanding of them. She also taught me to fight and what a fight she gave! Life always throws us curves but you just take it day by day and remember no matter what today brings you, tomorrow is another day!

Katelyn was and is a true blessing! She brought so much joy in my life. Although she may not have been able to verbally speak she definitely had a way to let you know exactly what she was thinking and/or wanting! In that respect she was a very typical 8-yr old. Her eyes showed how much she knew! She loved getting people into trouble and watching anyone get hurt. She adored getting her nails painted and being the “princess” of everything. Her smile absolutely light up an entire room and her giggles filled my home with happiness! She had a very unique and wonderful personality!

I will forever and always love you my sweet KatelynJ