While our fundraiser began on GoFundMe, we have transitioned to this platform as we have discovered GiveSendGo aligns more with our values.

To recap, for those who are not familiar with Tori's condition, Tori has been declining physically for a couple of years. We have been through many labs, doctors and major diagnostics which have included CAT scans, MRI's, blood work, ultrasounds, scintigraphy, colonoscopy and endoscopy along with many ER visits and a hospitalization back in April. It has been a long journey as we continue a few more tests to determine the cause of her debilitating pain.

Most recent genetics and evaluation by a genetic specialist led to the diagnosis of hEDS, which is Hypermobile Ehlers-Danlos Syndrome. EDS is a genetic connective tissue disorder. While this diagnosis explains some things, it is not entirely explanatory of the location of the debilitating pain. Although it was also established that she has had, in the recent past, a parasitic infection, which contributed to significant weight loss, (and went as low as 80 pounds when she weighed in after being hospitalized back in April), it has been determined to insufficiently explain the chronic pain that has her wheelchair bound. She was also diagnosed with IBS, gastritis, and visceral hypersensitivity following her colonoscopy in January and has additionally been cleared of parasites after receiving medication for the parasitic infection the last couple of months. That said, we have still been dealing with debilitating pain.

Tori has the additional dynamic of having been diagnosed at age 16 with high functioning autism. In addition, she received a mild brain injury that same year after being involved in 2 accidents, one when our vehicle was hit by a drunk driver, and another when she was hit by a car riding her bike.

Most recently, her doctors have ordered us to get genetic testing for suspected Myotonic Dystrophy Type 2, a type of Muscular Dystrophy. However, results will not be available til the end of August.

Due to the EDS, her ribs easily come out, and so even allowing her to maneuver her wheelchair independently is not recommended at this time. While I have hoped her doctors would be on board with prescribing special in home physical therapy, they have been against our moving toward that until it is established what is causing the chronic pain in her left abdomen and hip area.

Meanwhile, she recently received a skin biopsy regarding some hyperpigmentation that has also developed near the area of pain, and has an upcoming ENT visit to address some sinus issues she's been dealing with.

Due to her current physical condition and struggle with situational anxiety that is often exaggerated by her Autism, I am her 24/7 caregiver. While I can occasionally pull away as needed to run to the store, no one else lives here in the home to help support me with her needs. As a single mom, I am needed to get her to and from doctors appointments, and manage her medical and hygienic needs, communicate to her medical professionals, file for disability, etc. Her needs fluctuate, and there is no consistent schedule regarding her needs to go to the bathroom. Although she can feed herself, I manage all her meals and cook everything for her. This has made it extra hard for me to engage in meaningful income, which has led us to reaching out to God for help through those willing to be His hands on platforms like this one.

I thank you so much for considering, as God leads you, to make a donation to our needs as I continue to seek ways to make meaningful income here at home. This is why I have chosen a monthly amount of $4500 as these align with our present needs this coming month. I am hoping to see God move and help me find a way to make meaningful income so that amount can continue to drop over time.

Thank you and God Bless!

Deuteronomy 28:5-10 (The Voice)

5 Your basket will be blessed; it will be full at harvest time,

and your kneading bowl will be blessed; you’ll always have plenty of bread.

6 You’ll be blessed when you go out of your home

and blessed when you return to your home.

7 When your enemies attack you, the Eternal will defeat them for you. They’ll come against you from one direction, but scatter and flee chaotically from you in seven different directions. 8 He will bless your barns, and they’ll be full of grain; He’ll bless everything you do. You’ll be blessed throughout the land He is giving you. 9 The Eternal will make you a nation that belongs to Him in a special way, just as He promised He would, if you’ll obey the commands of the Eternal your God and live as He wants you to. 10 Every other nation on earth will see the Eternal has called you by His own name, so they’ll be in awe of you.

This campaign is unpublished.

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