Avleigh's Journey

Avleigh is such a beautiful little girl. Majority of the time she flashes her beautiful smile showing the world how happy she is. It’s hard to imagine the things that are really going on inside her little body. The harsh damage that this disease is doing to her is so hard to comprehend when you…

We pay lots of money on premiums, deductibles and out of pocket expenses for insurance. We, like many, are constantly battling insurance covering certain medical needs. We have been pretty lucky in most instances. They tend to approve most of Avleigh’s medical needs. The things that they decided not to cover we figured out ways…

I come to this website frequently and read all my blogs on our journey these past two years. Those years were full of information on Avleigh, PCH and her progression along with regression. I’ve been sitting here on this same draft blog for a few weeks now unsure of how to approach, or better yet…

Happiness is an emotional state of wellbeing and often referred to as the good life. Two years ago when we received Avleigh’s diagnosis that is what we said our goal was… it’s all about her happiness. We have always wanted her to have the absolute best quality of life. All the decisions we’ve made up…

We live our days to the fullest, cherishing every memory possible. Avleigh not only has a very rare disease, but she also has rare symptoms and unknown progression of the disease. We have most of these symptoms under control. We know that she has to be vented at least once a day to avoid vomiting.…

Today Avleigh has a trial run for a Baclofen Pump. Baclofen is the medicine that she receives by pill to help with her high tone and spasticity. Yes, our baby that has restrictions and can receive nothing by mouth is prescribed a pill because her insurance will not cover it to be compounded. We’ve been…

It’s the time of year that we all should be cherishing each other, giving to others and being cheerful. It’s time to sit back and truly take in what the holiday season is meant to be about… celebration of life. We love each day very fast day to day, often forgetting or running out of…

I read an article this week that was shared with our PCH group that really got me thinking. It’s about a toddler that had a glow stick straight out of the pack. An older child took the glow stick from the toddler. Just as the mom was about to fuss the older child cracked the…