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Pia's Path to Walk : NAPA THERAPY February 2025

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UPDATE (January 2024)
(AUF DEUTSCH UPDATE UNTEN)
Pia is already (!) 9 years old and continues to improve on her sitting, walking, writing and eating.

Today, we reach out to you from a place of heartfelt sincerity and hope.

As some of you might already know, Pia received a 2025 therapy spot to NAPA in Boston. It is a lottery system, so while we apply every year, we never know if she will get a confirmed spot or waitlisted.

Learn about NAPA here: https://napacenter.org/

We are so grateful for this opportunity. It will be her fourth visit to NAPA and every time, she makes great improvements.

Her reserved three weeks of therapy are in February, not giving us much turnaround time to budget or raise the funds to cover the therapy expenses (roughly $8,000 therapy, $3000 lodging + travel).

As many of you know from the videos we’ve sent or posted, Pia makes great progress during these intensive sessions. It is a lot of work for her, but her continued motivation, endurance and strong personality make it all worth it.

We know this is not the first time we’ve asked for your support.

And it continues to never be easy for us to ask for help, and doing so carries a weight of humility and gratitude from our side.

That’s why your support, in any capacity, is not just appreciated but wholeheartedly changes the direction of Pia’s potential.

We’ve always believed that change starts with awareness and grows through the collective efforts of compassionate people, like you.

Since the birth of Pia and Felix 9 years ago, we have been thrown into the world of special needs, disability rights, insurance, inclusion and more.

While we have stories of successes with therapists, insurance, school and everyday interactions with people, we also have a long list of difficult, disappointing, difficult, confusing, surprising, unjust and sad experiences when inclusion did not happen.

Thank you for your consideration and for the many ways you’ve supported us in the past.

It means the world to us, and we are grateful to have friends and family like you.

With love, thanks and gratitude,
Jamie, Roland, Felix and Pia
***************************************************************

UPDATE VON PIA MÜLLER : PIA'S PATH TO NAPA THERAPIE IN BOSTON!

Pia ist bereits (!) 9 Jahre alt und verbessert sich weiterhin beim Sitzen, Gehen, Schreiben und Essen.

Heute wenden wir uns aus tiefster Aufrichtigkeit und Hoffnung an Sie.

Wie einige von Ihnen vielleicht bereits wissen, hat Pia einen Therapieplatz für 2025 bei NAPA in Boston erhalten. Es handelt sich um ein Lotteriesystem, sodass wir zwar jedes Jahr einen Antrag stellen, aber nie wissen, ob sie einen bestätigten Platz erhält oder auf die Warteliste gesetzt wird.

Erfahren Sie hier mehr über NAPA: http://www.napacenter.org

Wir sind sehr dankbar für diese Möglichkeit.

Und ihre reservierten drei Wochen Therapie sind im Februar, sodass wir nicht viel Zeit haben, um das Budget aufzustellen oder die Mittel für die Therapiekosten (ca. 8000 $ Therapie, 3000 $ Unterkunft + Reise) aufzubringen.

Wie viele von Ihnen aus den Videos wissen, die wir gesendet oder gepostet haben, macht Pia während dieser intensiven Sitzungen große Fortschritte.

Es ist viel Arbeit für sie, aber ihre anhaltende Motivation, Ausdauer und starke Persönlichkeit machen es das alles wert.

Wir wissen, dass wir nicht zum ersten Mal um Ihre Unterstützung bitten.

Und es fällt uns weiterhin nicht leicht, um Hilfe zu bitten, und dies ist für uns mit Demut und Dankbarkeit verbunden.

Deshalb ist Ihre Unterstützung, in welcher Form auch immer, nicht nur willkommen, sondern verändert die Richtung von Pias Potenzial von Grund auf.

Es gibt mehrere Möglichkeiten zu spenden, die unten aufgeführt sind.
GoFundMe: bit.ly/3XXRpkl
Venmo: @ottmama

Für eine direkte Überweisung auf ein deutsches Bankkonto, hier Pia’s direkte Kontoinformation.
Pia Müller
Kreissparkasse Böblingen
DE36 6035 0130 1002 1139 70

Eine direkte Zahlung an NAPA, das Therapiezentrum, ist ebenfalls möglich. Bitte lassen Sie mich wissen, ob ich Ihnen diese Informationen geben kann.

Wir waren schon immer der Meinung, dass Veränderungen mit dem Bewusstsein beginnen und durch die gemeinsamen Anstrengungen mitfühlender Menschen wie Ihnen wachsen.

Seit der Geburt von Pia und Felix vor neun Jahren sind wir in die Welt der besonderen Bedürfnisse, der Rechte von Menschen mit Behinderungen, der Versicherungen, der Inklusion und mehr hineingeworfen worden.

Wir haben zwar Erfolgsgeschichten mit Therapeuten, Versicherungen, der Schule und alltäglichen Interaktionen mit Menschen zu erzählen, aber auch eine lange Liste schwieriger, enttäuschender, schwieriger, verwirrender, überraschender, ungerechter und trauriger Erfahrungen, wenn Inklusion nicht stattfand.

Vielen Dank für Ihre Unterstützung und die vielen Möglichkeiten, wie Sie uns in der Vergangenheit unterstützt haben.

Es bedeutet uns sehr viel, und wir sind dankbar, Freunde und Familie wie Sie zu haben.

Mit Liebe, Dank und Dankbarkeit,
Jamie, Roland, Felix und Pia
************************************************************
How our first fundraising began // Background Information 2017-2019
Pia is our 2 -year old daughter diagnosed with Cerebral Palsy.

Pia is in need of a life changing surgery, SDR, which will allow her to walk and live a life free of pain.

                                   Pia needs your help.
                       Thank you for reading her story.




We know Pia's future is full of hope.
But we need your help to make that happen.



What We Need
We need your help to keep the way bright and hopeful for Pia’s Path to Walk.

We need your help to give her the chance to run around with her twin brother, Felix, hike with us as a family, climb stairs, ride a bike, splash in the rain puddles and bath tub, play with friends, pick up leaves in the fall.

We need your help to give her the independence and dignity she needs and deserves now and for her future, from moving, eating, dressing and going to the bathroom on her own.

All of those things you wish and dream for your own children, we wish for Pia.

We are willing to do whatever it takes to support Pia.
But we can't do it alone and we need your help.



Pia's Future
For Pia, the main battle is against her constant muscle tightness (spasticity). While CP itself isn’t degenerative or progressive, spasticity is!

As time goes by, it will cause permanent deformities in Pia's bones and muscles that cannot be fixed.

This is why it is so important to reduce or eliminate the spasticity at an early age.


This brings us to today.
We are currently in the application process for SDR to be completed by Dr. T.S. Park at St. Louis Children’s Hospital in St, Louis, Missouri in the United States. We are hoping Pia will have SDR sometime during 2019.

What is SDR?
In 'simple' terms, SDR involves removing some bone from Pia’s spine to access her spinal cord.

Dr. Park then tests and cuts the dorsal nerves (50%-70%) that cause her spasticity, significantly reducing or permanently removing the constant tightening of her muscles.


What will your donation support right now?
The SDR surgery and the years of required physical therapy following. As we are not residents of the US, we are responsible for the costs and it is not covered by our insurance here in Germany.

After surgery, Pia will require physical therapy 5x/week for the first six months, 4x/week a week for the following six months and 2-4x/week for at least the following two years, based on her progress.


Based on information provided by St. Louis Children’s Hospital, the surgical costs, mandatory post-op therapy and rehab, flights, accommodations and required physical therapy and strength training for 2-years following the surgery, we need to raise $125,000 USD.


Our commitment to SDR and the required physical therapy following surgery means great changes
to our ability to work and earn income for the future.

Give Pia the Gift of Movement
                               Support Pia's Path to Walk

If you would like to send an offline donation,please contact us at www.piaspath.com or [email redacted] and we can provide additional information.

Visit our website for additional information:

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Donations 

  • Paul Comes
    • $100
    • 15 d
  • Anonymous
    • $7,500 (Offline)
    • 1 mo
  • Jeanne Gustafson
    • $100
    • 2 mos
  • Michelle Pallastrini
    • $100
    • 2 mos
  • Larry Wendell
    • $300
    • 2 mos
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Organizer

Jamie Clark Mueller
Organizer
Neckargemünd, Baden-Württemberg

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