The Katlyn

As the sun has set on this Friday night, tonight’s most beautiful light is angel Katlyn. It is our honor to introduce the Katlyn Binkeez for Comfort.

 

As shared by Katlyn’s mom…

Katlyn was born with an extremely rare metabolic disorder called Fumarase Deficiency. It is an enzyme deficiency that causes severe neurological damage. The results have been as follows:
failure to thrive
high and low muscle tone
Epilepsy/seizures
constipation
GI issues which include her entire GI system and motility issues
Unable to sit or stand
Non verbal
Surgeries which include: Back, hip, emergency bowel, G-tube, J-tube, tendon lengthening and botox
Aspiration Pneumonias/Lung issues/requires suctioning
Feeding issues
Spacticity

Katlyn has struggled with most of these issues since birth and some have gradually developed over time. Her disorder is progressive and so life for her becomes more and more difficult. Katlyn has always been a very happy girl and is a joy to be around. Life expectancy is unknown but expected to be shortened. In 2015 she was referred to Notre Dame Pedi Pals Palliative Care Program as her health started to take a turn with more hospital visits and ICU admissions requiring more critical care. After a recent hip surgery she has had major complications with her GI system and now deals with Chronic Intestinal Psuedo-Obstruction. This has resulted in the emergency bowel surgery and J-tube surgery for feeding as her system is functioning very poorly and was only tolerating baby/toddler formula. For a child that we were told may not live past child hood and most with this disorder only live to about a year, we feel blessed that on 12/25/2016 Katlyn turned “sweet 16”. Sadly our dearest Katlyn was admitted to Hospice Care in April 2017 and passed away on May 15th 2017. Thank you for your interest in my sweet Angel. Vicki Taylor💜💜

Moments from Katlyn’s Binkeez Dedication with, Tracy who is her Occupational Therapies.

  • Jeanette felton - Thank you for this!
    My great niece was very special to many people and with the love of her mother and all that loved her and were a part of her life!
    This makes my heart happy and sad at the same time❤️ReplyCancel

  • kay spinti - So sorry for your loss i couldnt imagine loosing a child.My thoughts and prayers are with you your family and friends till you meet again with this beautiful little Angel.Pictures are beautiful.ReplyCancel

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