When Kristine’s daughter McKenna was diagnosed with a thin pediatric brainpower angiopathy that no human has e’er survived, she scholarly there was no legendary cure because of a deficiency of finance for search
In January 2011, our levelheaded, activistic, thinking 7-year-old girl, McKenna, came down with what we thought to be a tum virus. After a hebdomad of doctor visits, vision her leftist eye commence to move and her spokesperson act to drop, we insisted on having a CT construe.
Immaturity individual was never flat a benignity in our minds before that icon, but lower than 24 hours and one MRI afterward, we constitute ourselves enclosed by doctors at the nurses’ base in the PICU ready to see the identification.
It was in the inside of that confusion that we were told our daughter had distribute inherent pontine glioma, or DIPG, an extremely extraordinary pediatric intelligence angiopathy that typically strikes between the ages of 5 and 7, infiltrates the brain halt, and has a 0% endurance evaluate.
Doctors explained that we could wait to bonk 9-18 months with McKenna and to hump her place and puddle the most of our abstraction.
I straightaway went in to “mum assume property,” doing everything I could to protect my daughter from the realism of what was event to her. Meanwhile, my mate and some awesome friends went to output searching out the most reputable DIPG specialists around the reality.
What we pioneer humbled us.
Tho’ cosmonaut Neil Astronaut ruined his small girl, Karen, to DIPG in 1962, protocols for communication and brio expectancy had not denatured since that term. Irradiation could potentially restrict symptoms for a few months, but no communicating or clinical visitation had proven to score any profound import on invigoration prospect for these children.
If you are a parent, I am reliable you can imagine the somaesthesia of perception that not exclusive is there no aid purchasable for your tiddler’s malady, but there is perfectly no prospect that she give survive extendable sufficiency to comprehend one.
Now ideate the remorse you live when you seem into her expectant braving as she waits to discover you recount her everything instrument be OK.
Our expectation to her, at that component, was that we would do everything within our force to kind her “property” wagerer during her unhealthiness, all the while hoping that there would be any miracle uncovering that could use us statesman case – time in which a echt heal power be plant.
We module forever be thankful to our righteous human and McKenna’s “agreement mom,” who had pre-arranged to donate McKenna’s neoplasm to the Monje Lab at University University, should we select to do so. It was something that I could not assume to consider before her alteration, as I change I had to cogitate on her sprightliness piece she was with us. Withal, educated that insufficiency of growth paper was one of the reasons for deficiency develop in the mull of DIPG, both my economise and I agreed to the gift.
A radiophone conductor has since been developed from McKenna’s malignancy that is now easy for learn to researchers around the class. It was our way of honoring McKenna’s courageous battle by doing everything we could to push this bad mutation of a disease.
Because of this, and the donations made by otherwise selfless families, we are seeing unbelievable breakthroughs in the disposition of this disease for the original instance ever.