Helen's Pink Sky Foundation - Hope Blooms

Spring has sprung, and the pinks skies are strong for our girl Helen. Helen's Pink Sky Foundation Team has been busier than ever since our last post, and we have our first sponsor signed up! (THANK YOU, Tradition Capital Bank)

Thank you for all the continued support through generous donations, meal train dinners, gifts, photos of your pink skies for Helen, and keeping Helen in your prayers. We are so thankful for the love and support.

What Has Helen Been Up To?

Helen received her second infusion at Mayo Clinic on April 14th, and she did amazing. I documented Helen's typical infusion day process in a "Day In The Life" series to provide insight into Helen's enzyme replacement therapy. Although we are incredibly grateful to have access to a treatment that helps slow down Helen's disease, I always leave the infusions heartbroken with the realization that Helen spends two days each month in the hospital receiving treatment to help us have more time together. This disease has robbed her of being a carefree kid, and that's what we're fighting to get back for her.

Here is a recap of the "Day In The Life":

Two days following her infusion, we traveled to Sioux Falls (April 16th) to meet with the Sanford Research Team. The trip was a 3-hour drive each way, and due to an issue with Helen's seizure medication, we spent most of the 6 hour car ride concerned that she might have a seizure.

DID YOU KNOW?

Helen takes two different medications each morning and two each night for her seizures. She was first diagnosed with epilepsy in the summer of 2024 after experiencing two major seizures within two months (the first in June 2024 and the second in July 2024). Initially, Helen was diagnosed with "Tonic-Clonic" seizures, a type of epilepsy, and was prescribed "Keppra" twice a day. In the fall of 2024, it became apparent that her speech was not progressing, she was becoming more clumsy, and she began experiencing eye flutters that caused her to lose balance and train of thought. After another significant seizure in January 2025, it was discovered that these eye flutters were actually small seizures occurring throughout the day. She was then diagnosed with a second type of epilepsy,"Epilepsy with eyelid myoclonia," a very rare form seen in only 1-2% of epilepsy specialty centers. Helen began taking "Clobazam" once in the morning and once at night, in addition to Keppra.

Giving Helen these medications twice a day continues to be a struggle for her and us. We hope that one day she will be able to leave the house without the worry of whether she took her medication, or if she has her rescue seizure medicine.

Unfortunately, Helen was exhausted and restless with the Sanford Research Team, so Dan went to the meeting while Helen, Tim, and I stayed in the car. We were very thankful that Helen's Godfather, Tim Meyer, flew in to support us throughout the meeting and the week.

Later in the week, we loved seeing Helen's big smile during our first boat ride of the season. We celebrated Easter dressed in pink and ate a bunch of candy. To ensure Helen could join the egg hunt, I attached balloons to some eggs to help guide her to them. While her brother and cousins ran wild after their eggs, the balloons were a sad reminder that Helen will always need this sort of extra love and support. Even for an egg hunt.

Helen's Birthday Is Coming Up!

Helen's 4th Birthday is May 31st - To help celebrate her birthday weekend, we invite you to join us for Helen's Pink Lemonade Stand fundraiser (May 30th through June 1st).

Who: Everyone is welcome! Kids, friends, family, schools, teachers - Remember to wear pink and share your photos on social media to spread the word.

What: Join us in celebrating Helen's 4th birthday by hosting a pink lemonade stand to raise funds for Batten Disease (CLN2) research in support of Helen.

Where: Set up your lemonade stand where you'd like, or if lemonade stands aren't your thing, please consider donating to help us fund finding a cure for Batten Disease (CLN2).

When: From May 30th to June 1st.

Why: It's Helen's 4th birthday - Let's celebrate! Enjoy selling lemonade outside with friends and contribute to funding research for a cure for Batten Disease.

More details to come... Including, special Helen's Pink Lemonade Stand merchandise to help you sell in style!

First Sponsorship - Tradition Capital Bank - Thank you

We extend our gratitude to our first sponsor, Tradition Capital Bank!

Thank you for stepping up to support Helen, our family and our mission to find a cure for Batten Disease.

Learn more about Tradition Capital Bank - HERE!

ARE YOU INTERESTED IN BECOMING A SPONSOR?

Join our sponsorship program and make your brand known as one who supports fighting for finding a cure for CLN2, Batten Disease, and other rare diseases. Please contact admin@hope4helen.org for more details - Help us reach our $10,000,000 fundraising goal!

Sponsorship Levels:

Champion of Hope Sponsor - $20,000

Premier logo placement on website and all event materials, mention in major press releases, logo on foundation sponsored event apparel, featured post on social media with ongoing placement on social and newsletters. (1 Year)

Advocate Sponsor - $10,000

Logo placement on website, logo on event materials, sponsorship announcement on social with three additional social mentions. (1 Year)

Supporter Sponsor - $5,000 

Logo Placement on website, sponsorship announcement on social media. (1 Year)

Community Sponsor - $2,500

Logo Placement on website. (1 Year)

Important Upcoming Dates:

• May 25th - Indianapolis 500 - WELCOME RACE FANS! Helen will have a big Indy500 presence cheering on her favorite Indycar Team, Meyer Shank Racing.

• May 30th through June 1st - Helen's Pink Lemonade Stand

• May 31st - HELEN'S 4th Birthday!

• June 9th - International Batten Disease Awareness Day

Keep sending your "Helen's Pink Sky" sunset pictures, and make sure to tag us in them on social media @helens_pinksky - People are starting to notice, and we love it.

Thank you for everything. None of it goes unnoticed.

We are meeting with more researchers this week to then pick the Team we are going to work with to find a cure for Helen. Keep sending your prayers!

I love you, Helen - We are going to change the world for you, so you can be part of ours.

Love,

Mom