Hats, Horses and Hope

Hats, Horses and Hope Hats, Horses & Hope is a Kentucky Derby fundraiser
benefitting Neurofibromatosis Northeast. Ladies, grab your hats! Gentlemen, dust off your bow ties!

Put on your best derby attire, and join us for frosty mint juleps, delicious southern fare, and horse wagering as we celebrate the 149th running of the Kentucky Derby. This is an adults only event. What is Neurofibromatosis (NF)? NF is a disorder that makes tumors grow uncontrollably throughout the body and skin during a patient’s entire life. It has a variable prognosis depending on the location,

size and type of tumors that develop. Many people with NF struggle with disfigurement, learning disabilities, social isolation, and poor motor control. There is no cure and little treatment for NF. NF is not rare. Nearly 1 in 3,000 people has NF.

02/21/2023

Brysons MRI is next week. I am so nervous. I am also so hopeful too. I am hopeful his tumor is still stable. 🙏🏼

I am waiting on radiology to call me with an updated date and time for next week. Oncology told me today they want his neck scanned along with his brain and orbits. The addition of the neck scan caused a ruffle in our original plans so radiology is working to get us re-scheduled for another time next week.

A lot was discussed today! We’re now “seriously” taking about surgery. His eyelid is drooping down over his eye more than before. I don’t know any details yet, I just know the surgery needs done.

We were finally referred and scheduled for orthopedics. We have an appointment at the end of the month. We shal see. Once again holding out hope! He jumps up and down in his jumper like no one’s business! I think his legs are okay ☺️ if they aren’t, I have a little game plan in my head. Things have come so far since I was little. Bryson and I apparently have the exact same NF gene mutation. I have tibial dysplasia/ pseudarthrosis. Doesn’t mean he does, its just something thing to consider.

We had labs and guess what? ANC is 3,500!!! That’s AMAZING. 🙏🏼

Bryson is doing great in all his therapies! He is soo close the crawling! I think he will be by next week! He still has trouble eating but that’s okay, we’re working on it! Speech is another area we’re going to be getting some help in. I can’t wait to hear him say mama❤️🥰

I also forgot to mention how amazing he is doing with taking his chemo medication every day. He just started “not fighting me” he opens his mouth and everything! I’m so proud! 🥹❤️

Now we just wait to see what the game plan is for next week!

Bryson is why we fight to
02/16/2023

Bryson is why we fight to

Brysons MRI is next week. I am so nervous. I am also so hopeful too. I am hopeful his tumor is still stable. 🙏🏼

I am waiting on radiology to call me with an updated date and time for next week. Oncology told me today they want his neck scanned along with his brain and orbits. The addition of the neck scan caused a ruffle in our original plans so radiology is working to get us re-scheduled for another time next week.

A lot was discussed today! We’re now “seriously” taking about surgery. His eyelid is drooping down over his eye more than before. I don’t know any details yet, I just know the surgery needs done.

We were finally referred and scheduled for orthopedics. We have an appointment at the end of the month. We shal see. Once again holding out hope! He jumps up and down in his jumper like no one’s business! I think his legs are okay ☺️ if they aren’t, I have a little game plan in my head. Things have come so far since I was little. Bryson and I apparently have the exact same NF gene mutation. I have tibial dysplasia/ pseudarthrosis. Doesn’t mean he does, its just something thing to consider.

We had labs and guess what? ANC is 3,500!!! That’s AMAZING. 🙏🏼

Bryson is doing great in all his therapies! He is soo close the crawling! I think he will be by next week! He still has trouble eating but that’s okay, we’re working on it! Speech is another area we’re going to be getting some help in. I can’t wait to hear him say mama❤️🥰

I also forgot to mention how amazing he is doing with taking his chemo medication every day. He just started “not fighting me” he opens his mouth and everything! I’m so proud! 🥹❤️

Now we just wait to see what the game plan is for next week!

Address

Wright-Locke Farm, 78 Ridge Street
Wi******er, MA

Telephone

+17812729936

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No more tumor worries!

Ladies, grab your hats! Gentlemen, dust off your bow ties! Put on your best derby attire, and join us on May 4th for frosty mint juleps, delicious southern fare, and horse wagering as we celebrate the 145th running of the Kentucky Derby. This is an adults only event with all proceeds benefiting the amazing work of Neurofibromatosis Northeast. Tickets are on sale now at http://weblink.donorperfect.com/HatsHorsesHope2019 What is Neurofibromatosis (NF)?

Neurofibromatosis (NF) causes painful tumors to grow uncontrollably on skin and nerve tissue. The tumors are largely inoperable and can develop anytime and anywhere, including the brain, spinal cord, and eyes. People with NF struggle with chronic pain, disfigurement, hearing loss and social isolation. 1 in 3,000 people has NF, but there is no cure and little treatment.

Our daughter has NF and struggles with tumors in her brain and eye, poor muscle coordination, learning problems, and social isolation. She understands the disease and the frightening possibilities it creates. Can you imagine hearing your child say she is worried that her headache could be a malignant tumor? No child and no family should have to worry like that.

The event