Helen's Pink Sky Foundation - Launch Week

shschneider33
Apr 13
4 min read

Helen's Pink Sky Foundation officially launched on Wednesday, April 9th. What a big yet bittersweet week it's been for Helen and our Family. We have been blown away by the amount of support and love from family, friends, coworkers, the extended Batten's community and even complete strangers who feel inspired to join our mission.

What Has Helen Been Up To?

Following Helen's first enzyme replacement therapy (infusion) at Mayo on March 31st, Helen spiked a high fever for a few days (expected side effect from the infusion that we'll have to get used to having), and then we were immediately taken down by Influenza B up until this week.

Unfortunately, on the day her Foundation was launched (April 9th), Helen had two seizures, and during one of them, we had no rescue medication. We managed to get through the situation and learned from her Doctor at Mayo that she is more susceptible to seizures when she gets sick with something like the flu. It was a challenging week, but we were excited to welcome Helen's Aunt Julie and Uncle Michael (from Michigan and Indiana) to Minnesota for their weekend visit.

Helen had a great weekend feeling extra special, and not sick with the flu for the first time in weeks! We've had numerous meal train dinner drop offs, dozens of park visits and her dad's friends even came over today to help build the deck on the playhouse we've been putting together for her and George.

It's hard to believe it's already been 2 weeks, but tomorrow morning we return to Mayo for her second enzyme replacement therapy (infusion). This will be another 4-hour infusion, with several additional hours required for port preparation and travel. It's challenging to accept that this is now a bi-weekly routine, but we are so grateful

for Mayo Clinic.

DID YOU KNOW? - The start of enzyme replacement therapy for Batten Disease/CLN2 (the type of Batten Disease that Helen has) became approved by the FDA in April of 2017, and this was largely due to the VanHoutan Family out of Chicago.

The FDA approved "Brineura" for children 3 years and older to help treat the version of Batten Disease, CLN2. At the time, only 150 babies born each year with Batten Disease had the rare form of CLN2 - and only 20 or so of those babies were in the US.

The VanHoutan Family - Our Inspiration:

Tracy and Jen VanHoutan lost their 11-year old son, Noah, to CLN2 Batten Disease in March 2016, and then their daughter, Laine, passed away from CLN2 Batten Disease in March of 2018.

Through their fight for their children, and advocacy for rare diseases, they organized fundraisers to raise over $1.5M for Batten research, and their efforts paid off when the FDA approved the first known drug to help slow the effects of CLN2 Batten disease. This milestone was about 1 year after their daughter Laine passed away.

Since then, the family has founded "Noah's Hope." Their story is an inspiration. When talking about their sweet daughter Laine, they share a story that around the age of 4 Laine started waking up in the middle of the night, usually at 4 AM, to play with toys. This story haunts me. This fall, Helen's sleep significantly worsened, and I would find myself getting woken up by the sounds of her playing with toys in the middle of the night (right around 4 AM). These experiences were crucial in reinforcing my gut instinct that there was more going on with Helen beyond her epilepsy diagnosis.

Their daughter Laine loved princesses, Disney, dancing and eskimo kisses - Just like our Helen. God Bless Laine, Noah and the VanHoutan Family - Thank you for all that you've done for the Batten's community and our children.

What else are we working on?

As we advance Helen's scientific research, we're also focusing on short-term awareness goals. Through networking, strategic partnerships, and fundraising, we'll soon update on new sponsorships, social media initiatives, Hope4Helen/Helen's Pink Sky Foundation merchandise, and community events to raise awareness and funds for a cure.

Social Media Series - Stay Tuned:

These social media series will give further insights into Helen's enzyme replacement therapy (infusions), Batten Disease statistics, "Donor Appreciation" highlights and "A Day in the Life Of Helen" which will showcase the different Batten Disease challenges Helen encounters.

We want everyone to get to know Helen for all her good, but also recognize the complications that come with this terrible disease. While Helen may look like a perfectly healthy child right now, she is struggling every day with speech, memory, seizure control and walking.

Important Upcoming Dates:

TOMORROW! - Monday April 14th - We will be doing our first "Day In The Life Of Helen," throughout her day at Mayo Clinic, while she gets her enzyme replacement therapy. This will give an inside look at the process, the infusion itself, how Helen does throughout the long day and our journey to and from Mayo.

Wednesday - April 16th - Helen, Dan and I head to Sioux Falls to meet with some of Helen's scientific research Team at Sanford Health. We can't wait!

Other Key Dates:

May 31st - HELEN'S 4th Birthday!
May 25th - Indianapolis 500 - WELCOME RACE FANS! Helen will have a big Indy500 presence cheering on her favorite Indycar Team, Meyer Shank Racing.
Helen's Birthday Weekend (May 30th - June 1st): Join Helen's Pink Lemonade Stand to celebrate her birthday and fundraise the old-fashioned way in PINK!
June 9th - International Batten Disease Awareness Day - More to come SOON!