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Hello and Welcome!
My name is Tenley and I am an "almost" 15 year old girl. I love anything creative! Give me a bucket of markers and a sketch pad and I will make tons of doodles. Give me a container of beads and a strand of string and I will bead bracelets. Only have glue and shaving cream? No problem! I will "borrow" my mom's contact solution and make slime! I, of course, love chatting on the phone with friends and hanging out with my older brother and his girlfriend. I always have my nails done and hair looking its best. I bet you are thinking that I sound like a pretty typical teenager, right?
Well, it turns out that I am anything but typical!
Here's why:
- I was born at 32 weeks premature.
- I was diagnosed with a stomach disease, called Gastroparesis, at 11 months old.
- I received my first GJ feeding tube at 11 months old and received feeds 24 hours a day through the "J port" also known as the jejunum (part of the small intestine).
- I found out that I am missing the neurological part of chromosome 16 (I still look for it at every park I visit).
- I slept for about 20 hours a day until the age of three.
- Anesthesia caused me to lose many skills and caused severe regressions that took months to regain with therapy.
- I was diagnosed with an auditory processing disorder and was blessed with low-gain hearing aids.
- I was diagnosed with Level 1 Autism Spectrum Disorder and received 15-20 hours per week of ABA therapy for about a year and a half.
- From the ages of 3-10 years, I went to sleep at 3pm for the night and slept through until the next morning (Yes, you read that right!).
- I was diagnosed with a mitochondria disease (this explains my need for sleep, extreme fatigue and anesthesia problems).
- My stomach disease always followed a pattern (2-3 months healthy, followed by 2-3 months sick). When I was in my healthy cycle, I was able to eat anything I wanted by mouth for pleasure.
- My favorite foods to eat: homemade waffles, overflowing cereal bowls, French fries dipped in an ice cream shake, cake, chocolate chip cookie dough, spaghetti, ice cream, and spinach dip.
- I sometimes use a wheelchair due to leg fatigue and weakness.
- From 10-11 years old, I was the healthiest I have ever been. I was thriving and even staying up until 7 or 8pm!
- At age 12, I caught the norovirus (the normal stomach bug) and my stomach was never the same. This was the beginning of a new life.
- At age 13, I caught the norovirus again! And this is when things became complicated. I went into intestinal failure and the virus caused all my diseases to flare-up. I spent 2.5 months in the hospital and even celebrated my 14th birthday there. The pain was unimaginable and my life was changing so fast. I was no longer able to be fed via a feeding tube. This was scary because this was my main way of being fed and receiving nutrition my entire life. The last alternative, which is not a good one, was to get a central line placed to my heart and receive nutrition via TPN (total parenteral nutrition is a method of feeding that bypasses the digestive system). At this point, I have been fed directly to the heart via a central line for over a year. Although not a preferred way to feed, it is my last resort and doctors have no more options. I traveled to Cleveland and Philadelphia in search of the best doctors, but received no good news. My days are short and I still go to bed at 5pm for the night. My life is filled with scary appointments and situations that no kid should have to go through, but I am supported by a family who loves me more than anything! I know that I do not fight this battle alone and have God and them always by my side. I do believe in miracles and have a strong faith that I will eat again one day!
The worst part about where I am in my life right now is the inability to eat or drink by mouth. I never realized how much of the world and community revolves around eating and drinking. You go to a friend's house and they have snacks, youth groups celebrate milestones with desserts and treats, community fairs have vendors set-up with hot food and cold lemonade, holiday gatherings revolve around a buffet of food and drink. My mouth is dry and sore and my stomach craves the taste of food. Am I hungry? No. But do I just want a taste of all the delicious food around me? Yes, of course! I have no choice though. On a great day, I can have a literal crumb of food. On most days, I can lick a lollipop. On a bad day, I just sit and wait for the day to pass and pray for a better tomorrow.
All this said, life can be hard and cruel. John 16:33 says "I have told you all of this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world."
MY MISSION:
I can't eat and drink, but others can! I know that I am not the only one who has suffering and hard days. We are surrounded by this in the world we live in today. My joy is bringing snack baskets to others. I get to shop for the best food and snacks, remembering all the flavors and joy that eating can bring. One of my biggest regrets is taking eating for granted and not treasuring every new taste and texture I experienced. Although I may not be able to experience eating right now, I can still be part of it and bring joy to someone else. Snack-it Baskets is striving to fill a basket each week and deliver to a community member who may not feel appreciated or noticed. It may be the mail delivery person who delivers mail rain or shine, the Amazon driver looking to make all his deliveries before going home to his family, the nurse who works tirelessly to bring joy to patients, the receptionist who smiles day after day, the neighbor who lives alone, the teacher who grades papers and answers emails throughout the night, the student who not only attends college, but also has a full time job. I know life is hard! But God gave us a community and each other! Please help support me in reaching my mission to reach the community one snack basket at a time.
What the money will be used for:
- Baskets
- Snacks
*Some funds will be used to fill baskets for Christmas for Levine's Children's Hospital In Charlotte, NC. The baskets will focus on teen girls and will include activities that will bring joy to a teen experiencing hospitalization.
Organizer and beneficiary
Zachary Izzi
Beneficiary