Grace #39 in The Large Q
Paying for in home physio therapy from Robin Macrae
Estimated Funding Date April 8, 2020
$8,400.00 of $8,400.00 funded
Baby Grace was born with a defect called Mosaic Triplodi - a condition where the body is lacking the nerves that connect the two hemispheres of the brain.
My daughter, Grace Malmberg was diagnosed with a rare genetic disorder called
Mosaic Triploidy. Grace was born into palliative care facility at Kelowna General Hospital
as our physicians thought that she would have miscarried or have been still
born. During the majority of my pregnancy I did not expect Grace to survive.
Instead of building a nursery we made funeral arrangements.
Grace was born full term at 4lbs 11oz and with strength of her will to live and loving
support she was considered a thriving baby after only three days in palliative
care. She went home a week later never being in the NICU.
Nurses gave my daughter the nickname ‘Amazing Grace’ because she was born with agenesis of the corpus
callosum (ACC) a rare birth defect (congenital disorder) in which there is a complete or
partial absence of the corpus callosum. The corpus callosum is a broad band of nerves that
connect the two hemispheres of the brain. The absence of these nerves can lead to
significant health issues in life.
Mosaic has affected Grace’s muscle tone by making it severely low causing feeding
difficulties as an infant and developmental challenges. At 3 months old we
discovered Grace had mild hearing loss. She now wears a hearing aids. In addition
to these challenges Grace was diagnosed with precocious puberty at four months
old. Precocious puberty refers to the appearance of
physical and hormonal signs of pubertal development at an earlier age
than is considered normal. Grace has had many hospital trips we never know of what is next.
Grace is currently a year and a half old and at her recent hospital trip she was
diagnosed with epilepsy. We will know more with future visits to children’s
hospital. There are many unknowns with her rare genetic disorder. I have been told that she is one of only four people in Canada that have defect.
Grace has had many Doctor appointments, and there are many sleepless nights for her and
I. But no matter the condition for Grace
she still can light up a room with her smiles. Grace’s favorite activity is
being in the water, every time she is at a pool her body can finally relax and
she falls asleep. Grace loves to play piano, music is her favorite.
Since Grace was born she has had amazing support in her life with amazing Nurses,
Specialists, Doctors, and the community church who continue to be amazing.
Grace and I have also ran into many obstacles. Grace requires physiotherapy to encourage
muscle growth. She has been on the wait list for her entire life. There seems to
be no clear time table for the necessary support to arrive.
I ran into Darrall and Van fundraising for Neurological Wellness at the Save On Foods
in West Kelowna on Friday. Van stopped me and asked for a donation. I was kind
of interested when I saw the neurological branding on their banner and I was
curious. They explained to me that NWA helps people with neurological
conditions. I asked them what the minimum age limit was and they said that they
work with any person who is ill. I told them about my daughter and Darrall
asked if I wanted to become a member and signed me up for free.
On Wednesday I was contacted by Eric who got me involved in the program and told me that Grace
would receive 95% of the total cost of service for her physio therapy. Eric also helped
me find an organic infant formula to help grace nutritionally. I am a single mother
who does all she can to care for her daughter. The additional burden of medical
bills for a child with needs like these are completely overwhelming. I hope that the help of neurological wellness Association and a
physiotherapist will help Grace reach her full potential.
Thank you very much support. I am grateful for the assistance Grace will receive
Neurological Wellness is committed to bringing Grace as many advantages as we can. In the short term this means our maximum subsidy for healthy food and physio for Grace with some counseling/support for Mom.
Update: Grace has been working with us for over a year now and is doing great as a result of in home physio therapy treatments from Robin Macrae. The cost for treatment are approximately $800 per month.
How will this treatment impact Grace's life?
This treatment will allow Grace the greatest chance of mobility while she grows.