As another year once again comes to an end I can’t help but reflect and look back as this year has been a special one; difficult and extremely challenging to me and my family. It took a lot of convincing for me to share what I am about to share due to its sensitivity and privacy in nature, however I feel I won’t have done my duty to thank God for not abandoning us If I decide to be silent about it.
If at the end of this message I will give heart to someone going through the same challenge, anxiety, fear and Loneliness I’ll sleep better. Early this year my sweet lovely daughter Ivanna was diagnosed with a rare autoimmune disease. It was marked by a sudden widespread attack of inflammation in the Brain and spinal cord called ADEM (acute disseminated encephalomyelitis)
Basically this disease damages the protective coating of the nerve fibers called myelin that act as conducters to all muscles for basic human functionality. What this means is that one day my beautiful four year old daughter stopped walking, soon stopped talking, soon stopped eating soon was so drowsy couldn’t keep her eyes open and thereafter went into a deep coma that she had to be taken to ICU and put on life suppport for a whole month. For the Larger part of her diagnosis doctors couldn’t even figure out what was wrong with her. We did numerous tests looking at every organ and blood but for a long time of hospitalization in Nairobi Hospital Children’s ward we couldn’t find it. All the while she kept deteriorating every day losing one function after another. Today she could talk the next day she couldn’t make a sentence. Etc.
Thanks to God and the brilliant doctors that were so kind and gracious in their work and how they diligently treated my daughter especially Dr Ismail primary ICU pediatric carer for my daughter, the overall lead Neurologist carer Dr Oyatsi and ICU nurses, Ward doctors and nurses we finally found a name to what was eating her. ADEM. As a mother this was my lowest time, I was crushed every day seeing my daughter wasting away and Couldn’t do anything. I was depressed, cried silently sometimes hoping God would see my tears. I always feared going to the ward or ICU because I wasn’t sure what function she would lose the next day or hour. Thankfully God saw my tears.
After almost 4 months of hospitalization starting from February to Mid June including one month in ICU My daughter Ivanna celebrated her birthday at home on June 22nd. She restarted school in September this year doing so well. She has fully recovered her mobility, vocal ability and all other cognitive abilities that she lost. She’s even bolder, more confident, talks too much, more intelligent and it’s nothing short of a miracle. God has truly come through for me and my family in big way. That’s why I couldn’t fail to Glorify Him through this post. I saw my blessing and miracle.
In the near future I am planning to share a more elaborate narration of what we went through and what this disease is but I want to both give thanks to God and the people who’ve been there for me and in the process hopefully encourage someone going through the same or worse time, not to give up and despair as God always comes through and day by day you’ll get through whatever you’re going through. Apart from the doctors, both ward and ICU, the nurses especially Nurse Judy who stood by Ivanna and worked so hard to give us hope and good treatment, the hospital support staff such as the security guards, the valet parking attendants, the admin staff, the catering staff who ensured we ate even when we forgot to! I have nothing but eternal gratitude and pray for all of you that God shows you the same kindness you’ve shown us.
To my family and partner, I can never say thank you enough because you shielded me, made me laugh, supported me and even made sure I never missed a bulletin or Upclose shoot throughout. You always reminded me to smile on air and keep my energy up when shooting Upclose even after waking up from hospital. Baby, you dropped me to work and picked me every working day and even made crucial decisions for Ivanna even when I was too weak to. Thank you Mum Mercy, Gloria for always being at Ivannas side, singing to her Moanas songs and talking to her when she was in a coma. Brian for your complex articles trying to help me understand what ADEM was.
To all my friends who never got tired even when I didn’t answer your calls but kept coming, to all my friends that gave me financial support, to all friends who cried with me. Thank you. To Ivannas occupational therapists who made it their own goal to see she talks and walks, David thank you. The teachers Njenga and Tony I appreciate the work you do for Ivanna.My nannies who loved her as if she were your daughter thank you. My Flair By Betty team for always praying for me. Thank you. My boss Peter, K24 family that understood my battle and always called to check in and supported me to the very end. Thank you.
This is not a sympathy post or on a light weight a wooooye post I am happier, stronger, more courageous and grateful. Ivanna is GREAT. A LITTLE QUEEN. So please instead of anyone feeling sorry for me or my family kindly make an effort to support, visit, encourage anypone you know is sick or has a sick loved one in hospital/home. As you end this year and pray for one another. Love one another. Be kind to one another.
Happy new to all of you and God bless us all and our country. Love BK.
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