Kaylen is a vibrant and loving 4-year-old little girl born in September 2009 who has 22q11 deletion with DiGeorge sequence, B Cell, T Cell and NK Cell lymphopenia, neutropenia, impaired B cell response and hypogammaglobulinemia, as well as Chiari 1 Malformation. Kaylen did not respond to titers (immunizations) so she has no resistance to a lot of everyday common things we are able to fight off without a notice. Currently Kaylen is being followed closely by neurosurgery, neurology and immunology as well as her Complex Care Service team at BCH. She is suffering from debilitating headaches, eye pressure and gait issues where some days she can barely walk from the Chiari and a new found mass. She has had many complications since birth with more arising almost daily. Kaylen had started IVIG therapy in December 2012 to help boost her immune system and unfortunately, it has caused more complications. Kaylen has a very long list of complications and symptoms, which means even more specialists. She as a single kidney with disease that is worsening, COPD, a tracheotomy to secure her airway with supplemental oxygen, two different types of feeding tubes (Roux En Y Jtube for feedings), severe gut dysfunction leading to the rerouting of her intestines, bladder retention, an ASD of her heart and many, many more. Kaylen has also been diagnosed with ADHD and Autism, related closely to her syndrome 22q11. Unfortunately, medical intervention is not an option because the medications raise blood pressure and for Kaylen it could mean an instant stroke. Kaylen has already suffered a stroke during infancy due to hypoxia.
Last Christmas (2012) she was in the midst of a very unsuccessful IVIG course that left the family filled with so much sorrow as it caused more disease to Kaylen's already frail body. This Christmas Jess and Kaylen stayed in Boston at the Children's Hospital December 23rd through the 25th for a spinal and brain MRI and a complete immunology work up to check her levels. The results confirmed many of Kaylen's neurological issues but brought even more sorrow and fear, sadly on Christmas Day. Kaylen has a confirmed diagnosis of hypogammaglobulinemia (CVID) of her blood and unfortunately, IVIG is the only "band aid" of treatment which she is unable to have in a safe way because of the side effects. The finial decision needs to be made if we will trial IVIG therapy again as our last hope of treating this horrible blood disease.
With all of this being said the love and happiness that Kaylen exudes is enough to write a book about! She is simply amazing and a hero to her own mother never mind the many people she has yet to even meet. She has an amazing memory and if she has met you once she remembers you as a friend for life. You will always be greeted with a hug and smile. (Ask the UPS guys lol) She has a warm soul and bright energy that surrounds her always. Her older brother Kaleb has helped show her the way to a warm and loving life. They absolutely adore each other.
This page is to raise awareness and spread the word about her rare illnesses and to remind everyone to fill your hearts with joy and laughter daily.
Don't forget to pay it forward, Kaylen style. Smiles and hugs are always free!!
If you have come to our page because you received a small gesture of someone paying it forward in Kaylen's honor please leave a comment and let us know how she played a roll :)
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