Hannah

Hannah was born and diagnosed with Moebius syndrome. She had to undergo numerous treatments for other medical problems; she had to have a tracheotomy and a feeding tube. After spending the first three months of her life in the hospital Hannah was finally able to go home. Due to the extensive trauma she experienced while being in the hospital Hannah developed complete oral aversions and a number of sensitivities relating to tactile stimulation throughout her whole body. Much time was spent with Occupational and Physical therapists to try to overcome these sensitivities; because of Hannah’s determination she was beginning to overcome these sensitivities.

In July 2006 when Hannah was just nine months old we attended the 7th Moebius Syndrome Conference in San Francisco. It was an enlightening experience for me. I gained so much knowledge about Moebius Syndrome and thankfully I was able to develop a whole new network.
Hannahs health was sustained until March 2007 when we decided to go to England to see family with the added intention of taking Hannah to the :indens Clinic that works with facial paralysis. There Hannah would undergo a program of facial stimulation specifically designed for her levels of facial movement and reaction to electronic stimulation. Unfortunately Hannah became unwell and was admitted to the hospital. After two months of ongoing illness, I decided the best thing for Hannah was to return to America where she had been under a consistent level of care, and her condition was well known amongst the doctors and therapists that were involved in her treatment and sustaining of her overall health.

Once returning to America Hannah was admitted again to the hospital though only for a short period of time. During our visit to Endland, despite being so ill Hannah had become more determined to learn new things and hecommunication and reaction to people had reached a whole new level. On returning to America this only continued. At such a young age she was so smart and she definitely knew exactly what she wanted and what she did not want. I could finally see at 21 months the maturity growing in her as a toddler. Although she was not quite walking, or could not talk or cry or make facial expressions she communicated with her eyes. Her eyes were a well of communication, so intense that we knew exactly what she wanted. I spent half of my time trying to figure out what drew people to her, she captured everybody in every way. There was a magical aura around her that just made you fall for her the very moment you met her.

On the 21’st of June of this year Hannah’s tracheotomy came out and she went into respiratory distress which led to a cardiac arrest. We lost our dear sweet Hannah that morning and with that most of our souls.

When Hannah was born with Moebius Syndrome and the numerous othere medical problems she had to endure, I knew from the beginning that I was assigned to her and I was the best mother for her; we somehow suited each other. Taking care of Hannah and dealing with her day to day problems was in no way a burden: it was a joy, even though in her short life so much of our time was spent going backwards and forwards, to the doctors and to the hospital. Hannah did not cry of get upset for no reason: she dealt with everything and was so strong. Hannah loved to dance. We would say “So you think you can dance” and she would wiggle her little bottom and then shake her head. It was so funny, and had me in hysterics on so many occasions.

I think we spent our days dreading something like this, but I think experienced a certain amount of denial that anything so awful would ever happen. The tracheotomy coming out was so unexpected. I do not think we will ever know xactly what happened that morning, how the tracheotomy came to fall out. Hannah’s memory shall live on in my heart and in the hearts of many other people that loved and cared for her. To me she was a true inspiration, I will never forget her. I will love you forever Hannah Jade.

This is the obituary as seen in the newspaper:
Hannah Jade Devine!

Our precious Hannah jade Devine, born September 28 2005, went home to be with Jesus on June 21 2007. She is survived by her mommy, Katie Penycate and Daddy Chad Devine. Hannah also leaves behind her grandparents, Carol Miller, Roger and ida Penycate, Mark and Susan Knox, and Steve Devine, Sr.; her great-grandparents Desmond and Suzanne Sparkes, and jessica Edward; Uncles: James Penycate, Corey Devine, Garrett Devine, and Steven Devine, Jr.; Aunts:Sally Penycate, Jennifer Devine, and Aunt B. Hannah also leaves behind her devoted caregiver Anne Conkle, and many other loved family members and friends. Hannah was loved by all and she gave so much love in return.

A funeral service will be held on Wednesday, June 27, 2007 at 1:00 p.m.

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