Our Little Angel needs your help!!! Pray, Follow and Share our story...

KrayziE RussiaN

KrayziE RussiaN

Experienced Member
Joined
17 January 2008
Messages
350
Location
Austin, TX / Pensacola, FL
It's been a while since I've posted here on Prime and I hate for this to be my post. The complete story and updates are available in the link below...

http://www.gofundme.com/6zp1kw

Our little angel was diagnosed with SMA (Spinal Muscular Atrophy) on Feb. 18, 2014. SMA is known as the #1 genetic killer of infants and currently has no cure. I'm trying to reach out to anyone that can help in order raise funds for the ability to take time off from work to spend it with little Madison and medical expenses.

We will still continue to pray everyday for a miracle because God will have the final say in what will ultimately happen. Madison deserves a miracle and we could really use one! These funds will help us find that miracle, even if it's in the form of a new miracle drug. In the end, we will also donate to further SMA research. So a HUGE thank you ahead for your generocity!!!

If anyone can help us in any other way, like doctors, medicine, etc. then please don't hesitate to contact me here! I'm open to ANY and ALL help! I'm not going to sit back and have doctors tell me there's nothing that can be done... I'm not in denial here, trust me! I just choose not to lay down... I will fight until there's nothing to fight! We've done our homework on SMA but are not quitters. Thank you ALL!

We have two grandfathers and a team of great-grandmothers & great-grandfathers in heaven right now that are watching God's every step! I don't think he'll have a chance against them all, so the power is definitely on our side! We're all fighters!

We'll update everyone, as the days and months progress! We need your help to make this go viral and not only help raise funds for ourselves but also raise awareness for any expecting or future parents.

Here's great source for more info on SMA: http://www.fsma.org/


1888508_10152242372665993_1149000057_n.jpgphoto.jpg

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LATEST UPDATE IS: Well, this little angel keeps defying all odds! She keeps showing these doctors how much fight she really has! From being told that she would never leave this hospital and we had to make a decision soon, she has now shown the doctors that she can sustain on the high-pressure nasal cannula for hours at a time without any issues. If we can ultimately get her off the mask and get her to sustain on this without high-pressure then she could go home. No, this will not beat the SMA unless a cure is found, but we can at least possibly have a few more months or even years to enjoy with Madison. We're very hopeful and ask for continued prayers! They're obviously working!!! Thank you for the generous donation, they're very helpful in taking the extra stress of worrying about our bills at the time so that our focus can be on our little fighter! Please continue to PRAY, FOLLOW and SHARE our story!!! We'll update as we get news!

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MODS PLEASE MOVE IF YOU FEEL IT'S IN THE WRONG SECTION
 
My thought and prayers to you bro, I have 2 kids and one on the way my family will pray for your baby Madison.
 
paypal is: [email protected]

Thank you for simply reading our story! Prayers alone have been a great help thus far! It's been one crazy roller coaster at the hospital so far.

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shawn110975 said:
My thought and prayers to you bro, I have 2 kids and one on the way my family will pray for your baby Madison.
Click to expand...

Thank you for the prayer! That's all we ask and they've been working so far.
 
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My son is a insulin dependent Type 1 diabetic since 6 years old. We've been dealing with this for 8 years already and I know how it feel when your closest one are in these types of condition. Madison is a beautiful little girl and I'm sure God is watching her. Keep us posted on her progress. She'll be the one to beat this!

I just sent something to your paypal, nothing much but it's my gesture of a lending hand. Many who I don't even know have done the same for me in the past.
 
Prayers have started. Please let us know if you need ANYTHING.

Regards,
LarryB
 
Our thoughts and prayers are with you. Hang in there.

Dave and Leni
 
so very to sorry to hear of your daughter's illness. having healthy children of my own i can't imagine what you're going through. funds have been sent via paypal. i'll have madison put on our prayer chain at church tomorrow. god works great miracles and hears your prayers. don't stop believing.

best regards,
rog
 
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I truly appreciate all of the support during this tough time!!! Please continue to pray for Madison because right now that's what's been keeping us going in the right direction. Madison's underlying illness is not curable (for now) but we were hoping for at least another year or so with her. Definitely didn't think we'd be here so soon! It has definitely been such a roller coaster ride here at the hospital and we were finally heading in the right direction but just had a major setback today. After less then 24 hours from being moved from the PICU (intensive care) into the IMC (intermediate care) unit we were back in the PICU. For full updates, you can click on the fundme.com link above and below here and follow our story. I try to update it there as we get news or any changes come up. We've been truly blessed with great staff here at Dell Children's Hospital in Austin and are surrounded by great friends, family and awesome nsxprimers! All donations are greatly appreciated but never expected. We do however expect everyone that reads this to take a minute to say a prayer to the good Lord above. We realize that there's a lesson in this misfortune and simply ask for His guidance during this time. We've put everything in His hands and trust in Him. Thank you again for even taking the time to read this!

http://www.gofundme.com/6zp1kw

PayPal: [email protected]

Facebook: krayzierussian
 
Having had a child with many problems, I can somewhat understand what you are going through. It is heartbreaking for sure and your story has brought me to tears. Our God is faithful and will supply all your needs. I will continue to pray for little Madison until she is healed. I have sent a small donation to help via Paypal.

Blessing,
Gary
 
Oh Man!
My Family and I will keep you in our Prayers!!!!
This is a heartbreaking story however, we are aboslutely believing for a Miracle!
 
Madison and your family are definitly in my prayers. Madison is a brave and very strong little girl. I believe that miracles do happen through faith and prayer. I know how stressful this must be for you and your family. I'll also pray for God's peace and strength that passes all understanding.

My God Bless you,
Ed
 
God bless you and your family brother. I have said a prayer and will continue to pray for a miracle for your beautiful baby Madison. You have our support on prime!
 
Thank you again for everyone's support and prayers! The prayers have once again worked and she's stable in the PICU now and back to her old self. They're working hard to clear up her left lung with therapy and so far so good. We need to get it clear in order for it to pop back open. No huge improvement yet, but at least she's stable. Keep praying!!!
 
Thank you everyone for the continued prayers and support. We've had a great response from this forum! She's still fighting a tough battle but stable. Please continue to pray! Thank you again!
 
Sorry to hear. :redface:

A little donation to show my support. My prayers is also with you. Keep you head up :wink:

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Sent! :smile:
 
Have any of her docs told you if there are any gene modification therapies available as orphan drugs.Such specific treatments can cost tons but because they are deemed necessary to sustain life they can be covered under insurance.Since wernig hoffmann syndrome is recessive both you and your wife must be carriers.I'm sure your docs have counselled you both about that.
 
docjohn said:
Have any of her docs told you if there are any gene modification therapies available as orphan drugs.Such specific treatments can cost tons but because they are deemed necessary to sustain life they can be covered under insurance.Since wernig hoffmann syndrome is recessive both you and your wife must be carriers.I'm sure your docs have counselled you both about that.
Click to expand...

I haven't heard of the Gene Mod Therapies although the rest we have been counselled on. I know there's current trials for drugs, etc but most are closed. She also has Type I and it's the worst of the types. Right now she's simply fighting respiratory issues and it all took us by surprise. We knew about SMA after getting the diagnosis but didn't think we'd be here so quickly after a simple fever from what we thought, to her battling for her life as we speak. Our understanding was that we would have much more time and didn't really have time to let everything sink in before we found ourselves in the PICU. If you have information regarding anything that we might not know about please share because we've seem to have run out of options. Even though Dell is such an excellent Children's Hospital they don't seem to have a huge understand of the SMA and at times we feel that we get mixed messages about lil Madison's condition. We understand that nothing will fix the underlying issue but we hope to possibly beat the respiratory issues and at least get to take her home for a few more months.

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Caroline-NSX said:
Sorry to hear. :redface:

A little donation to show my support. My prayers is also with you. Keep you head up :wink:

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Sent! :smile:
Click to expand...

Thank you! It's greatly appreciated!

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liftnot said:
a small donation sent and a lot of prayers continue.
Click to expand...

Thank you! It's greatly appreciated! Prayers are all we really ask for!
 
I agree with docjohn. Without knowing all of Madison's history, it appears very likely that her illness is due to a specific genetic deficiency. In other words, both copies of a specific gene called SMN1 are not working properly. One way of treating such illnesses is to artificially introduce the functional gene into the cells that need it. This is called "gene therapy". There may be a clinical trial in Ohio that can help Madison. It is a gene therapy trial specifically for Type 1 SMA patients. The study appears to be accepting new patients.

http://clinicaltrials.gov/ct2/show/NCT02122952?term=scAAV9.CB.SMN&rank=1
 
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angelo619 said:
I agree with docjohn. Without knowing all of Madison's history, it appears very likely that her illness is due to a specific genetic deficiency. In other words, both copies of a specific gene called SMN1 are not working properly. One way of treating such illnesses is to artificially introduce the functional gene into the cells that need it. This is called "gene therapy". There may be a clinical trial in Ohio that can help Madison. It is a gene therapy trial specifically for Type 1 SMA patients. The study appears to be accepting new patients.

http://clinicaltrials.gov/ct2/show/NCT02122952?term=scAAV9.CB.SMN&rank=1
Click to expand...

I'm going to contact them but it may be too late for us in our case. In the process of trying to get her left lung re-opened they have over-inflated her right lung. We're told that there's no chance of getting that left lung open now. They'll be moving us out of the PICU tomorrow so that we can get rid of some of the extra leads/wires and spend more quality time with Madison in the following days. Still praying for a miracle but it doesn't look good for us.
 

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