Friday, January 27, 2017

A #FightingForMaya Update - Infusion #9

Yep, you read that right... Maya has completed Infusion #9... Woooohoooo

As you can imagine, we are so thankful and fortunate to have this option.  It is our sincere hope that this treatment is made available for all families and approved by the FDA here in the states (and in Europe) as soon as possible.

Maya is an awesome patient, her only complaint is that she gets a little bored at the hospital -- she has explored the outer reaches of Instagram, Netflix and Amazon Video ;-)

Many of you ask if Maya is getting better.

From a purely scientific perspective that is a hard question to answer.  Since Maya's form of this disorder is so rare, and it has never been studied, no one really knows at what rate it will naturally progress.  We just know that it will progress.  Over time, if Maya does not progress or if she gains back functionality, then we know that she is getting better.  The doctors are specifically looking for improvements in walking and speech. Slowly, we are seeing the precursors to improved walking and speech.

From a non-scientific perspective, we think that it is helping Maya.  Usually it is people who haven't seen her in awhile, they will comment that she seems stronger, more engaged, her walking (with aid) is more confident or her speech is easier to understand.

Personally, I notice that her core strength is stronger and she is more confident and willing to try new things.

                        Maya has taken to indoor rock climbing.  She starts with an instructor on Sunday.

In my mind, the new confidence is an indication that she is feeling better.  Again... these are my non-scientific observations.  If you ask Maya, she will say that she doesn't feel as tired.

It is our intention that Maya will once again walk, climb, hike, dance, run and play with reckless abandon.

Sometimes we like to give Dr. Em a tough time.  Maya is her oldest and tallest (5'4") patient in the program.

After hours of research, we've discovered that a couple of rounds of PieFace are a great way to break up the day.  We love this team at Nationwide Children's Hospital.


We've also started a tradition of watching Jimmy Fallon's lip synch battles at the end of each infusion... Its good to celebrate each success with a hearty laugh.  Below is Maya's favorite (we hope it makes you laugh).

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