This is Keiralyn’s story. Keiralyn will be 4 on April 22, 2015. You probably are saying, sure she's cute but what makes her so special? What makes her so unique?
Keiralyn was born with an extremely rare genetic disorder known as CDKL5. CDKL5 is a rare X-linked genetic disorder that results in early onset, difficult to control seizures, and severe neuro-developmental impairment. Children affected by CDKL5 suffer from seizures that begin in the first few months of life. Most cannot walk, talk or feed themselves, and many are confined wheelchairs, dependent on others for everything (to learn more about the disorder go to www.cdkl5.com). At the time of Keira’s diagnosis there were less than five children in Canada diagnosed with the same condition. Although the numbers are rising in the world there are still under 500 diagnosed cases.
On March 25, 2009, before Keiralyn was born, her older sister, Kennedy came into the world. Kennedy is a 5-year girl full of life and laughter. She is a ball of personality. Kennedy is an amazing big sister and takes her job seriously. She is always there to help her mom and dad. Kennedy is so involved in the care of Keiralyn; she even knows how to properly hook up and run Keiralyn’s feeding tube. Kennedy is a child that knows unconditional love. It’s beautiful watching them “play” and seeing Kennedy hug and love Keiralyn – without being able to have Keiralyn cognitively return the emotion.
From birth Keira seemed to be perfect, developing like any other new born. At 8-weeks old Keiralyn started to have large seizures. Her family was in Edmonton while her dad, Garrett was in Vermillion, AB completing his education at Lakeland College. Kate and Keiralyn spent many nights at the Stollery Children's Hospital in Edmonton, Alberta. Kate was alone, dealing with the unknown. Keiralyn was given great care while in the hospital; however, the doctors were guessing and unable to give Kate any answers as to what was going on with her baby. After many months, many tests and many seizures the hospital continued to have no answers. Keira continued to be in and out of hospital both while in Edmonton and back in her home town of Winnipeg, Manitoba. As her parents struggled waiting for an answer Keira continued to have seizures daily. Although Keira was on several different medications to help with the seizures, nothing seemed to be helping. The doctors suggested giving Keira a feeding tube and trying her on a new high fat diet. The feeding tube not only allowed Keiralyn to get the nutrients she required but also made it easier for her parents to give her the medications the doctor’s believed would help her. Unfortunately despite all the efforts from medical professionals including her neurologist and nutritionist, Keira’s condition continued to overtake her body and she was unable to develop as a healthy child would. Keira has lived much of her three years in and out of hospitals, having invasive tests done. She continues to have seizures and is unable to communicate or care for herself in any capacity.
Kate and Garrett were once told Keiralyns condition was palliative and they have done everything they could to provide Keira with a comfortable and happy quality of life. April 2013 they decided to reach out for help for Keira. A family in the Great Britain have a daughter with the same genetic disorder. They heard that this young girl was walking, a huge miracle for a child suffering this illness. Much thanks to the physiotherapy available as well as the water therapy she gets using her very own hot tub. Garrett and Kate reached out to two organizations including the Make a Wish Foundation and were turned away because Keira was not at the cognitive ability of a 3-year old. The unfortunate truth is Keira will never be at that developmental ability. She likely will never walk, she'll never talk to express her wish or be able to say thank you. Keira will never be able to tell her parents, sister or family she loves them, she can’t express what is hurting or what she is feeling
Discouraged but never ready to give up Garrett and Kate organized a community garage sale. With the help of the community and of Keiralyn’s family they were able to raise the funds in order to get her a hot tub. Garrett built an enclosure so that she will be able to use the hot tub all year round. The benefits have been amazing. Keiralyn is a different girl while in the water. She is able to move freely and get exercise. The community had come together to help this family. Once again, they were shown the kindness of strangers when the Fire Department in Niverville, Manitoba (the town Garrett and Kate reside in) came together to raise money and donated it to assist with Keiralyn’s care.
The same year as the diagnosis for Keiralyn, Garrett and Kate found out they were pregnant with their 3rd child, a son. When Kate was 9 weeks pregnant she and Garett travelled to Toronto, Ontario to have the fetus tested for the CDKL5 mutation. They waited patiently hoping for positive results. When Kate was 19 weeks pregnant she started bleeding. She went to the hospital and later was turned away. The next day age returned to the hospital, still bleeding. This time she was given devastating news... I'll never forget the phone call from my brother that day when he said, “no matter what Brit I'm not losing my son"... The world had another plan. After living under an hour Connor Lawrence Denis Hawgood was born, baptized and had passed away. Garrett, Kate, Kennedy and Keiralyn had to say goodbye to their boy.
In the summer of 2013 Kate and Garrett were given yet another challenge, more devastating news. They found out their eldest daughter Kennedy was diagnosed with Lymphoma Cancer. She is currently undergoing chemotherapy treatments.
Through it all these two parents have never quit on themselves, their love or their children. They are both excellent members of society and in their chosen professions are constantly giving back to the community. In April 2014 Garrett successfully transferred over from his career as a paramedic and became a firefighter with the City of Winnipeg. In May 2014, Kate successful obtained her Education Degree and is now teaching grade one in rural Manitoba. With both daughters having medical appointments they are constantly on the go running from hospital appointments, neurologist appointments, nutritionists – the list goes on. Both parents are working full time and Kennedy has started school.
In October 2015 Garrett and Kate are hosting a Community Charity Social in honor of Keiralyn. They are hoping to raise money to purchase a wheel chair accessible van. This van will assist them in transporting Keiralyn and all of her medical equipment. Let’s show them the community can come together once again and help them hit their goal. This family has been through dark times and it’s so nice to know that people love and support them – so let’s show them!
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