NEW updates, "diagnosis", and more Ninja Warrior

THANK YOU SO MUCH. With your help, we’ve been able to help Nat even more than before.

We want to send a BIG thank you to the thousands of individuals who shared this page and even submitted suggestions, ideas, prayers, and more.

Through spreading the word, we have landed on some amazing therapies that have helped Nat grow stronger than we’ve seen AND help her land an official diagnosis.  Although, this diagnosis isn’t considered “good” and will be a difficult journey ahead for our family, we are hopeful that we now have a direction in which to point and a greater context for supporting her.
Through all of your input and our journey these last two months since we first shared this page, we have found three things that have been most helpful – checkout our video for more info.

 

Ninja Warrior's Diagnosis:

Sounds strange.. that is because it is. Nat G is one of the few people documented with this specific mutation.  We sometimes talk about this is if it is a diagnosis but we have been told that is not correct. THIS IS NOT A DIAGNOSIS!  This is a mutation that gives us a path to go down.

“A mutation in PYROXD1 is known to be a cause of autosomal recessive limb-girdle muscular dystrophy. The affected individual with a homozygous recessive PYROXD1 mutation showed progressive muscle weakness with an onset at the age of 9 years. Initial symptoms included excessive falling while running, with slowly progressive weakness. Difficulty navigating stairs by the age if 18, and loss of ambulation at the age of 37 years.”

As you can see, if this is what Nat is dealing with, it has set in very early on.  Her case is considered SEVERE by her doctors.  With very little known about this mutation, there is virtually ZERO information available to us…or to anyone, let alone suggestions on what we can do to help her continue to grow and thrive.  Also with Natalie showing signs this early it means it is extremely rare, extremely aggressive, or a combination of the two.
Because of the risk of this being aggressive and progressive, we need your help in spreading the word so we can connect with those who can help us help her.

Sounds strange.. that is because it is. Nat G is one of the few people documented with this specific mutation.  We sometimes talk about this is if it is a diagnosis but we have been told that is not correct. THIS IS NOT A DIAGNOSIS!  This is a mutation that gives us a path to go down.

“A mutation in PYROXD1 is known to be a cause of autosomal recessive limb-girdle muscular dystrophy. The affected individual with a homozygous recessive PYROXD1 mutation showed progressive muscle weakness with an onset at the age of 9 years. Initial symptoms included excessive falling while running, with slowly progressive weakness. Difficulty navigating stairs by the age if 18, and loss of ambulation at the age of 37 years.”

As you can see, if this is what Nat is dealing with, it has set in very early on.  Her case is considered SEVERE by her doctors.  With very little known about this mutation, there is virtually ZERO information available to us…or to anyone, let alone suggestions on what we can do to help her continue to grow and thrive.  Also with Natalie showing signs this early it means it is extremely rare, extremely aggressive, or a combination of the two.
Because of the risk of this being aggressive and progressive, we need your help in spreading the word so we can connect with those who can help us help her.

These three things are working most to help Ninja Warrior grow and thrive - but we still need your help.

Hyperbaric Oxygen Therapy

At least 2 days a week we are traveling to the doctor to sit in a Hyperbaric Chamber for Nat G to receive the benefits of this therapy.  It is 60 min at a time and traveling is becoming more and more difficult.

On top of that, it would be beneficial for Nat G to be able to do this every day at least once.  With that we are looking for a way to get a chamber for our house.  They   cheap and they are not readily available so any ideas on where to go or how to get one, would be greatly appreciated

Diet/Absoroption

We feel strongly there is an absorption issue that is also causing her physical delays.  This is why we are in the hospital right now, getting a tube directly to her stomach (G tube).  This way we can feed her more of exactly what she wants and avoid things she should not eat.

We have looked into FAOD and there is no know connection between her mutation that we have found but we have seen her bodyweight grow by nearly 20% and she has started growing hair on the front of her head,  Both anecdotal proof that when she is on her “Tube Food” (Kate’s Farm) she is developing in ways she hasn’t before.
Our food of choice – whole foods based formula – can be expensive and not always covered by insurance companies.

No Scientific Sense, But Working

The one thing constant that has been helping is people praying from all over the world.  We as that you pray for the following three things:
  • Healing that is scientifically undocumented – “supernatural” or outside the norm of what has been seen in regards to her condition
  • ​Access or funding for a Hyperbaric Chamber we can have at home
  • ​Answers for ways for her to properly absorb the nutrients she needs to grow and develop.
We have seen some miraculous results from people praying for Nat G. and some the best development can be directly related to specific prayers.  We are excited for you to pray BIG prayers alongside us, and of course, we welcome prayers for our entire family.

(Post From The Past)Our Thanksgiving Surprise!!!!

Thanksgiving has been a little different for us this year. We are excited to celebrate Zach’s first Thanksgiving with us and to be with our Philly friends and family who we love and miss all the time…but it just looks a little different than expected. The day we shared Nat’s story via social media and our new website helpNatG.com she got very sick. Then this morning she took her first surprise helicopter ride over the city of Philly and has us sharing our Thanksgiving dinner with our new doctor and nurse friends over at the Children’s Hospital of Philadelphia PICU. This little warrior continues to fight on – and while the trials keep coming, we count them joy because God reveals something new about her story to us through them…and each has us a step closer to understanding more fully what she is battling. It’s not lost on me that evil tries to step in when God brings people together for good. But, we won’t allow that to win or overcome our hearts. We are grateful for today. We are grateful for tomorrow. And we know God is always victorious in the end!
If you want to help us, all we ask is that you share her story so more eyes can see her case and maybe we can find some answers! Our website is below that shares what we know so far. Don’t hesitate to reach out and ask us anything.
#helpnatg

this may seem strange, but... WE NEED TO STEP OUTSIDE THE BOX TO SEE IF WE CAN HELP NAT G!

We know this is strange, but we believe in seeking out creative and innovative input in both our life and in our business, Life Pulse Inc.  One of the main things we help people to see is that what we do to be successful in our professional life can also work in our personal life.

We use Click Funnels to share and spread our own content and reach more audiences, So why not use it spread the most important information we have on the biggest mystery we are facing. Our baby girl is going through a long fight trying to figure out what is stopping her from moving. She is wildly intelligent for her age, but her body can’t seem to catch up to her.  In fact, her intellect is nearly 4.5 years old while her body is at 8 months old.
If you look at the medical records we have uploaded here, we have exhausted nearly all traditional medicine, as far as answers. Because of that we need to reach out to the rest of the world. We want this to go viral in order to help us find information that can help Nat’s lives and maybe even the lives of other kids out there like her who haven’t been able to get any answer yet either.  So far, we haven’t met anyone with Nat’s exact lineup of “conditions”, so we ask if you are reading this, please share this with ANYONE you can.

We are so grateful to have amazing people in our life wanting to help with Nat. Here is a video that we have created to see the progression and regression of Nat from her birthday (4/18/17) to 24 months old. You will see the milestones she hit, the milestones she missed, and the ones she has had a little regression on.

This video brings us up to her stay at the P-ICU in August of 2019 which made us realize that there may be more that can be done to help diagnose, support, and encourage Nat through this unknown and confusing journey.

We have collected and compiled ALL of Ninja Warrior's medical records below to share with all of you. Please click below to see any information on her health history.


Chronological By Event

See Ninja Warrior Records

Alphabetically By Specialist

See Ninja Warrior Records

HERE'S HOW TO HELP...

Share This Page 

You can use the buttons we have provided or you can copy and past the URL. If you know anyone inside and outside of the medical world who could have some input we ask that you PLEASE share this with them. We need your help to help our daughter!

Share This Page 

You can use the buttons we have provided or you can copy and past the URL. If you know anyone inside and outside of the medical world who could have some input we ask that you PLEASE share this with them. We need your help to help our daughter! you can copy and past the URL we have provided or you can copy and past the URL. If you know anyone inside and outside of the medical world

buttons we have

Share This Page 

You can use the buttons we have provided or you can copy and past the URL. If you know anyone inside and outside of the medical world who could have some input we ask that you PLEASE share this with them. We need your help to help our daughter! You can use the buttons we have provided or . input we ask that you PLEASE share this with them. We need your help to help our daughter!

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So throughout Ninja Warrior's entire life, there have only been three times we have seen any improvement with her ability to become mobile.

I promise you, nearly all of them are unexplained. This is one of the things that is making it harder and harder to diagnose what is going on with her. Please read below with the understanding that these are experiences that we are sharing and not theories to what will work... they are based on things we have seen actually work with Ninja Warrior.

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