Save Brave Belinda & Alesea

$5,000 goal

Campaign created 11 months ago
Created October 10, 2017
My Brave Sister Belinda has battled through 4 Major Life Threatening Brain & Spinal Surgeries, 4 Super Infections, Blood Clots and most recently a full year of undiagnosed Adrenal Insufficiency which involved 10 months of complete GI Dysfunction, Lethargy, Weakness, Inability to Function and remained Bedridden which ended with a recent Life Threatening Adrenal Crisis in the Hospital. She's not stable yet, but desperately needs our help. She will tell you that all she's been through isn't as hard as what she's facing right now as BOTH she and her daughter Alesea are in need of URGENT testing, followed by Surgery in NY prior to 12/31/17.

I hoped to have this fundraiser completed for her by her birthday today... but it's been a rough week for Belinda. So, I'm copying her post from Facebook for now. I'll be creating a YouCaring at some point since it does take out less fees, but starting GoFundMe first since it appears to be most popular. I will come back and complete all I have to say.

My sister has not once faultered in her faith that God will bring her through and she is beyond grateful for all who have been there for her and our family. I thank you in advance for helping both of them. (Please note: this is not the grand total they will need to also have surgery in NY, but any funds received over the amount of their current costly medical needs will go directly towards those expenses.)

One of the HARDEST POSTS I've ever written, please kindly read and pray for us:

Thank you to all the beautiful people in my life; friends, family and those I've never even met. I praise God for each of you! We all need prayers, support and love, and even more so during difficult times; such as this... I'm preparing to complete the hardest medical intake forms that I've ever had to do. Following which, a special fundraiser will be necessary ASAP. I truly hate having to ask for help again, but it is a genuine need to extend "our" lives. (I have some creative options to raise funds as well and appreciate help from anyone who has some great ideas).

Why so difficult? Not only am I on an "Urgent" list for more Major Surgery back in NY (before our Insurance ends on 12/31/17)...but my child will likely be having Major Life-Saving Brain Surgery at the same time I do. She is suffering so greatly and it absolutely breaks my heart. It's much different to be the one suffering vs watching your child suffer. It's the hardest thing ever to not be able to take away the pain.

I can't provide confirmation on dates, treatment plan, etc... just yet as we both need to complete some costly extensive local testing, MRI imaging, urodynamics, etc... and get it to our Surgeon in NY ASAP to confirm exactly what our treatment plans will be via an "Urgent" Teleconference. Then be prepared to fly to NY due to the urgency my Chiari/EDS Expert has expressed. The greatest news possible would be that she doesn't require surgery, but we must still raise the funds for all the testing needed and her teleconference to be fully evaluated and excluded. Sadly, I feel she waited as long as possible and is at the point of surgery given her pain and symptoms.

I am praying for God to allow this additional need to be met as well: We will have to hire a full-time Caretaker to watch Maya (while we are gone and for a while after we return), provide transportation and then help meet all of our needs when we return, as it's vital that we follow all discharge instructions for proper healing, formation of fusions and prevention of CSF leaks. We will also require a separate Caretaker in NY as we will be unable to take care of each other. Please keep this in mind if you know of anyone who may be perfect for these.

When I found out that I had Chiari Malformation and sadly that it is hereditary, I had my beautiful kids evaluated in 2014. Both of which have confirmed Chiari Malformation per a Chiari Expert.

We then took the next step in seeing what, if any, related conditions we all had that could be done locally. Per our DNA and our Geneticist's assessment: We all have Ehlers-Danlos Syndrome (EDS), even our tiny little Maya.

The combination of which typically means Surgery is very likely at some point especially as the defective Connective Tissues become stretched and too lax causing posterior and anterior Brainstem Compression (Chiari Malformation plus CranioCervical Instability) Along with other related issues like Spinal Instability, Tethered Cord and Eagles Syndrome.

I can't begin to express how hard I've prayed for the kids to avoid what has been my painful journey. On a positive note, being equipped with these answers allows us to go forward with necessary surgeries for the kids when needed and way sooner than I did which prayerfully limits the progression of permanent damage and pain much sooner. Having traveled this path first, helps me better understand what the kids are experiencing, what symptoms to be aware of and knowing exactly whom to see to take care of them and I'm beyond grateful to God for that!!!

Please keep us in your prayers and be on the lookout for a new Fundraiser as I pray you will help us get the word out. Thank you for your continued love, prayers and support! God bless you!  ❤️ xo
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$5,000 goal

Campaign created 11 months ago
Created October 10, 2017
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