This weeks blanket of the week is Violet Madison Wehrkamp. I met Violet's Mom Allison when my husband and I first found out we were carriers of SMA. She was the first person that I talked to in the SMA community and was so kind to me. Thank you for your friendship and support during this difficult time in my life.
Here is Violet's story from www.littleflowerviolet.com
Violet Madison Wehrkamp passed away on August 27th, 2010 due to respiratory failure from SMA
Type 1. She was 6 months 8 days and 1.5 hours old.
Type 1. She was 6 months 8 days and 1.5 hours old.
"Violet was born on February 18, 2010. She was our first child and she was a perfectly healthy, beautiful little baby girl. Of course we immediately fell in love with her! She was our life and we were so excited and ready to teach her everything we could. Little did we know but Violet would be the teacher and we would learn so much about ourselves, our family and love and life. How could such a little girl be so wise? She had an old soul and we are so blessed she chose us as parents!
We began to notice she was not hitting her gross motor skills milestones at her 2 month well visit. She began physical therapy through PA’s Early Intervention program and she showed promise of improvement. She was always very sociable and loved to coo, smile and laugh. As the weeks and months went on, we still suspected there was something wrong with her. After some research, Muscular Dystrophy popped up on Google, along with SMA. I was heartbroken because I knew she had one of those and I was terrified it was SMA because she fit all the symptoms. She had severe low muscle tone, no head or neck control. In fear, my husband and I took her to Children’s Hospital in Philadelphia on Aug 2, 2010. The neurologist immediately suspected SMA and they took blood from her. Meanwhile, a few days prior to her doctor’s visit she seemed to have a rattle or wheezing in her chest and she was coughing a lot and it began to affect her feeding. Our pediatrician started nebulizer treatments. She seemed to improve slightly the week of Aug 2. But on Friday Aug 6, 2010, after I picked her up from daycare and she was napping she started making these horrible squeaking sounds. When I checked on her, her nose was flaring and I could see her ribs as she struggled to breath. I took her immediately to our local ER (we live in the Poconos area in Pennsylvania), they did a chest x-ray and she was confirmed to have pneumonia and she admitted to the hospital. At the very same time I received a call from the neurologist to have me schedule an appointment to go over her bloodwork. I knew it was bad- if the doc wants to talk face to face instead of over the phone- it’s bad… so I called the neurologist back and begged her to tell me the results over the phone.
She finally got in touch with me the next day Aug 7th and confirmed our worst fears that Violet had SMA Type 1. After our local hospital and pediatrician learned this they immediately sent us to Lehigh Valley Hospital PICU so Violet could get the very best treatment. We spent 3 weeks at Lehigh Valley PICU. During that time, Violet was intubated, underwent bloodwork and chest x-rays daily, was constantly under sedation medication, had a feeding tube inserted through her nose and “lived”. The whole time she would look at me with these eyes just asking why we were there- I knew she wasn’t happy and she didn’t understand what was going on. The worst was I was unable to even hold her and cuddle with her because of the breathing tube- but the great nurses and doctors at the PICU allowed me to sleep in the same bed with her so we could be close. It broke my heart to see her in that condition. In the end, they extubated her because they thought she had a chance to go home with some medical equipment because she had been improving. The day she was extubated was her very best day since she entered the hospital- she smiled, laughed and cooed and I held her the whole day- we even got a special walk outside with the nurses, respiratory staff and resident- Violet smiled and it was like she was herself again- she totally lit up and it was like we had our little girl back! But within 12 hours of extubation her left lung had collapsed and she was only working with half a lung on her right side. She didn’t tolerate a BiPap machine so she had been on oxygen since the extubation, but we knew it couldn’t last forever. We knew we would lose our little girl and that she would never come home again to see her puppy, Noodles… to take naps with Mommy on the couch… to sleep in her crib… to be rocked to sleep in her rocking chair…to talk… to grow up and be a kid and a grown woman… to have children of her own… that was all taken away. On Aug 27th, 2010 at 1:30am Violet passed away in my arms and I never cried so hard. We miss our little girl so very much and we would’ve traded places with her in a second. We know there is nothing we can do to change what happened, and we hurt more than anything right now. But we will always remember Violet as our beautiful little angel with the most expressive eyes ever. Violet loved lions, elephants, fish, cows and she would giggle every time she saw her puppy, Noodles, do his tricks. Her personality was infectious and everyone she met was drawn to her. She loved to coo and smile at us and she showed us more joy in the 6 months she was with us than I have ever experienced in my lifetime. We are slowly picking ourselves up off the ground and trying to put the broken pieces of our life back together… we feel like we can never be whole again since a part of us is now gone, but we feel that Violet wanted us to spread her story and to educate others about SMA and the importance of carrier testing and our hope is that another family NEVER has to feel the heartache we feel after losing a child to such a horrible disease. No one should ever lose a child this way… SMA sucks and it’s just not fair."
50% of each purchase is donated to FSMA in memory of Violet
Click the picture below to take you to Violet's Blankie
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