Join the pack for Jess!

$12,946 of $40k goal

Raised by 120 people in 37 months
Patricia Henry  BUFFALO, NY
Hello my name is Patty and I would like to tell you about a remarkable family that needs our help. They are Deb (mother), Nicole (sister), and Jess, whom this fundrasier is for. I have known this family  for over six years. They are your typically family that likes to have fun, laugh, and cry together. When tragedy hits a family it is horrible, but when tragedy hits the same family more than once it's awful. About five years ago the family suffered a terrible loss of their beloved father and husband to  an untimely death. While dealing with the death of their father, Jess was diagnosed with RSD (Reflex Sympathetic Dystrophy). This left Deb to take care of two daughters, both of which have medical problems, as well as the emotinal feelings pertaining to the loss of their father and her husband. I have watched jess go from a young healthy lady with all the dreams that children have to being wheelchair bound. Even through all of this they always try to have smiles on their faces.


After months  of endless doctor appointments and doctors trying to figure out what was wrong with Jess they finally diagnose her with RSD. RSD is a disease of the Autonomic Nervous System where the severity of pain that Jess feels is much more than the average person. A usual RSD patient has their illness localized to one area of their body, however Jess' illness is throughout her entire body. The pain she feels due to a minor cut could be equivalent to a broken bone in a person without RSD. Jess is in an enormous amount of pain every day and despite that through all the pain she graduated from West Seneca West High School.

There is no cure for RSD it can only be maintained in order to allow Jess to live a productive life. The only form of treatment is to help control the amount of pain that she goes through on a daily basis. For the past two years Deb was unable to kiss or touch her daughter due to the RSD. How awful of a feeling  is that when you cannot comfort your loved one with a simple touch or kiss on the forehead.

Through research and support groups Deb has found a treatment  that will help her daughter. In mid January Deb flew her family to Florida to get a Ketamine treatment for Jess. After the Ketamine treatment the family was thrilled with the results. For the first time in a long while Deb was able to kiss her daughter on the forhead and hold her hand. Tears of joy were running down their faces. What a great feeling for a mother to be able to do the simple things in life. Jess was feeling great, in less pain, and on her way to remission. When they came back Jess had intensive pool therapy. She did well with this and even took a few steps in the water despite the fact that she could not walk or even wear shoes on a normal day to day basis.



One downfall with the treatment is that any little cut, bruise or illness can cause Jess to go right back into severe pain and that is exactly what happened. She ended up getting gouit and this caused her to go backwards in her recovery. She needs another treatment of the Ketamine but the treaments are very expensive. A treatment is usually four days and with accomaditions it runs  between $15,000 and $17,000 dollars. Insurance does not cover this procedure. Mom is doing everything possible to give her daughter the life that she deserves and help fulfill her dreams of going to college and being able to drive. However, in order for this to happen she first needs to get Jess in remission. Could you imagine seeing your loved one suffering  day to day and not being able to do anything about it or feeling helpless because you cannot take the pain away? For more information on RSD please go to www.rsdhope.org or look at the bottom of this page.
 

The whole family tries to have a smile on their face when you see them and never complains about anything they just keep living life to the best of their abilitiy. I cannot say enough about this family and how they have been a postive influence in my life and every one they meet. They changed the way I look at life and what is important in life. Since we all face problems in our life it all depends on how we look at them. Deb is a remarkably mother  to her children, always trying to give them the best life possible. She is the rock that holds her family together and has installed many good quilities in her children. The one quility that stands out that she taught her children is to never give up. You definitely can see this in your day to day interaction with her children, especially in Jess, as she is a remarkable young lady and a great big sister to Nicole.  This is to help cover the cost of medical treatment. Please share this with as many people on Facebook and ask them to share it as well. Every little bit helps and with everyone's help we can help give a young lady the life she deserves.

Updates will follow.
Thank you for your support

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Update 5
Posted by Patricia Henry
7 months ago
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I just wanted to do an update on Jessie's story. I have not done an update in a while as nothing has really change in her condition. I want to start with some positive news.The family just adopted Angie which is going to be a service dog for Jess. Angie will be trained to open and close doors , turn lights on and off, and carry Jessie's emergency medication. This will give Jess the freedom to go to the movies or the mall and not have her mother with her. They are also hoping to train her to help with mobility for Jess as a weight bearing service. Angie has the right temperament to be a service dog. The training will be expensive and take about 18 months. They have already registered her as a service dog in training. At this point and time the greatest gift that mom can give her daughter is the freedom to be able to do the simple things in life.

There has been a few things that have been going on these past nine months. Mom found a new treatment that looked promising for pain relief. So off they went to Arkansas to The Neurological Relief Center to try a 10 week treatment as it turned out Jessie's RSD won the battle. The treatment caused such an increase in her pain that the doctor stopped the treatment after a week. Yes another disappointment for the family but knowing mom as I do she will never give up looking a some relief for Jess. So they came home for a short period before they went to Florida for a Ketamine treatment. They know that the Ketamine will not help with the pain but it does help with the swelling. Of course none of this was covered by insurance, it was all out of pocket. Later this month they will be going to Cleveland Clinic. Jessie has severe Gastroparesis, and will be giving a smart pill. It is a camera that will record info on her GI tract. The family depending on results she could be a surgical candidate. As I try to understand what she goes through on a daily bases (which I will never fully understand what she goes through every day of her life). Just to here some of the simple things cause her great pain, just imagine having watering eyes or crying and having burning pain of fire running down your cheeks. We all take the little things in life for granted, but for Jess those little things can cause her pain for hours or even days.

Please help Jess to obtain her independence in any way you can. This young lady deserves it!!
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Update 4
Posted by Patricia Henry
27 months ago
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Just a little update, Jess and her mother flew to Florida within this past week to get Jess the Ketamine treatments. So far the Ketamine is not relieving her pain. In fact she has been vomiting all night long and her spinal cord and legs are on fire. RSD is such a terrible disease and it has taken it toll on Jess. She is such a beautiful young lady that deserves to get some relief from the pain that she endures every day of her life. Please pray for her and share this link with as many people that you know. Even if you shared it in the past share it again. Lets show Jess and her family that we are behind her in every way. There are strength in numbers. Thank you to all the people that will share this link
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Update 3
Posted by Patricia Henry
30 months ago
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Jess has been in the hospital for almost a month now. It started back on September when she went to Florida for a Ketamine treatment. she ended up getting really sick and vomited so much that they could not do the last treatment. They came home and she has been in the hospital every since, only out for a few days. They put a ND tube in for feeding but her RSD went out of control and she was in a lot of pain. Jessie will be coming home on Wednesday the 22nd, she is still in a lot of pain and still vomiting . Mom has been by her daughters side the whole time she was in the hospital. The medical bills will be outrageous for this family please help in any way possible. This is truly a well deserving family that needs help
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Update 2
Posted by Patricia Henry
32 months ago
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Jess and her family have been in Florida for the last two months. They went down there for treatments. The treatments are very involved Jess gets 8 hours of ketamine and physical therapy most days. Some days she has both treatments and those are the days were Jess is exhausted. This family is the strongest family I know even though Jess is still in a lot of pain she is able to stand and walk a few steps with a walker but she has a long way to go before she is in remission and a lot more treatments. While down in Florida Jess had to have surgery for her gallbladder to be taken out. She has recovered fine from the surgery and is once again getting her treatments for her RSD. They will be home shortly and will only be here for a short time before they leave to go back to Florida for another treatment in September and yet again in October. Mom will do any thing for Jess to give her the life she deserves but all of this has taken a toll financially on the family. Every little donation helps. You can also show your support on November 3rd by wearing orange for Jess as it is RSD awareness month. One person can make a difference in this family life as they struggles through the pain that RSD has caused this family. There are many ways that people or a community can help this family all you need is an idea and a leader to take action. So please donate today and be that person that makes a difference.
sincerely
Patricia Henry
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Read a Previous Update
Stephen Guiliani
22 months ago

Hi Patty. As you see my name is Steve. What you dont see is that I also have RSD/CRPS. Have dealt with the monster within for 16 years now. I also am a Ketamine patient and am have very good results. But it takes time. I started them in 2008 but took until 2011 to get out of my wheelchair. Tell Jess to keep her head up and just try to keep her head in the game. I also run a facebook page for RSDers and if Jess and her family would like to join in our conversations I would happily add any of them. I may not be able to give cash but can definitely give moral support. Semper Fi STEVE

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Leah Benzin
23 months ago

Pls contact me regarding the help we wanna give with getting the goal n more for this beautiful girl. Leah. 200-9400

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$12,946 of $40k goal

Raised by 120 people in 37 months
Created April 3, 2014
MM
$25
Michele Macey
19 months ago
1
1

I can't even begin to imagine what you are going through Jess. I got a letter in my mail box and heard your story. I know this won't take a way the pain but I hope it helps ease this difficult time. You are a beautiful girl and I will say prayers that this pain will someday subside. God Bless you and your family.

MC
$30
Mollie Crescente
23 months ago
1
1

I received a letter in my mailbox from Matthew asking for bottle donations for this cause. I want to applaud Matthew for his efforts. Instead of giving him my bottles, I am going to offer money directly for this worthy cause, but wanted to Matthew know that I was personally moved by his letter. God Bless Jess, her family and Matthew!

$25
Anonymous
25 days ago
RR
$20
Robert Roth
27 days ago

Wishing you the best in every way !!

$20
Jacob Tomaszewski
1 month ago
CD
$360
can drive
1 month ago (Offline Donation)

I would like to say thank you to all those people that put their cans out on the March 5th can drive. Also to all the people that have been saving their cans for me. It really means a lot to know that good people are willing to help. every nickel goes a long way and again I want to say thank you for your kindness

CD
$280
can drive
1 month ago (Offline Donation)

I would like to thank everyone that donated their cans on February 12 to help this family out I can not tell you how every little nickel cunts in such a big way. If it was not for your generosity this would not be possible. Again thank you

TT
$25
Tkpizza Tkpizza
1 month ago
CD
$500
can drive
2 months ago (Offline Donation)

on want to say thank you to all of the people that donated their cans for the November 26 can drive. we would not be so successful if nit was not for the generosity of people willing to put their cans out for this family. it help this family out tremendously. Again thank you for all that you did as a community. Matthew and Patricia

CD
$450
can drive
2 months ago (Offline Donation)

I want to say thank you to everyone that donated their cans and bottles on the November 19 2016. It was a success because of people like you that took the time to leave their cans out for us to pick up. Again thank you for your donation Matthew and Pat

Stephen Guiliani
22 months ago

Hi Patty. As you see my name is Steve. What you dont see is that I also have RSD/CRPS. Have dealt with the monster within for 16 years now. I also am a Ketamine patient and am have very good results. But it takes time. I started them in 2008 but took until 2011 to get out of my wheelchair. Tell Jess to keep her head up and just try to keep her head in the game. I also run a facebook page for RSDers and if Jess and her family would like to join in our conversations I would happily add any of them. I may not be able to give cash but can definitely give moral support. Semper Fi STEVE

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Leah Benzin
23 months ago

Pls contact me regarding the help we wanna give with getting the goal n more for this beautiful girl. Leah. 200-9400

+ Read More
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