Please Help Kristen help Julianna

For: Kristen Hipwell
Organizer: Kristen
$4,274
of $3,500 goal
100% Complete
Raised by 29 donors
This fundraiser is closed. Thank you for your support!

The Story

My name is Kristen. Last year I was diagnosed with Ehlers Danlos Syndrome, which is a connective tissue disorder. I have had health issues for my entire life, but things seemed to get worse while I was pregnant with my beautiful daughter, Julianna. I had multiple bleeds that sent me to the emergency room where I was repeatedly told I had miscarried because of the amount of blood loss. I was put on bed rest until my water broke at 27 weeks and then I was admitted to the hospital until Julianna was born at 29 weeks. Julianna needed major surgery due to a ruptured bowel the day she was born. She was in the hospital for almost three months and had a very rough time in the NICU where we almost lost her. Julianna has now been diagnosed with Cerebral Palsy and Autism along with other health issues like asthma, and being hypothyroid. We are both going through the same genetic doctor to find out if she also has Ehlers Danlos Syndrome.
Julianna is my entire life and all I want is to make her happy and to be a strong advocate for her. Having Ehlers Danlos makes this difficult in so many ways..
I need bracing for my entire back. My ribs and scapula sublux easy, I have scoliosis, ruptured discs, spinal stenosis, degenerative disc disease and arthritis that would normally be seen in someone in their 60's. I have already endured cervical spinal surgery to avoid paralysis. All of these things make playtime, bath time, dressing, etc. very painful and sometimes impossible. I have had to resort to hiring someone to come over to bathe her and to do her stretches for her Cerebral Palsy when I am unable.
I have splints for my fingers, but haven't bought all of them as I can not currently afford them. My fingers hyperextend and become extremely painful. My fingers and joints also swell to the point that I was advised to get two sets of rings in different sizes, but I am just wearing them when they fit for now. As you can imagine..you need your hands for pretty much everything.
I have braces to help stabilize my feet. I have dislocated my ankle twice and have had multiple surgeries on my right foot due to my extremely hypermobile feet. I also have severe Raynauds and Chilblains which means I can not tolerate cold at all. I have to be careful to avoid infection from blistering and ulcers. I can't go anywhere unless I know there will be places to sit and rest frequently. This definitely means not going anywhere alone with Julianna.
Ehlers Danlos effects so much more than just joints and skin. I am currently being seen by a cardiologist, neurologist, rhuematologist, physical therapist, occupational therapist, gastroenterologist, my regular doctor and genetics. My daily life is painful, and the fatigue makes keeping up almost impossible some days.
My goal is to have all of the proper bracing to support my joints to reduce pain and fatigue, and to continue with my physical and occupational therapy so I can learn to strengthen muscles to support my joints.
Julianna deserves a healthier and stronger mother so she can get all of the support she needs. Thank you for taking the time to read about me and my daughter, any help is appreciated and needed to cover all of my medical costs.

Fundraiser Updates

Posted on April 30, 2014

Posted on April 30, 2014

My fundraiser ends today and I wanted to say thank you one last time. I will always be grateful to everyone who shared an interest in mine and Julianna's health. I am touched by everyone's generosity. Some donated money, some medical equipment, some sent me messages of support and love and it all has made this easier for me. It wasn't easy putting up a fundraiser for myself and I am glad I had caring friends that talked me into it. I had some people look down upon me for doing this, but having a disability teaches you that you need to ignore the negativity, there isn't room for it. I have by far had way more people reach out though. I have even been reunited with my father whom I had barely known as a child. So, I can say I have no regrets whatesoever about asking for help, I just hope I can do enough to give back.

Jeremy does murals for special needs children at no cost to the parents. He was first motivated to do this by seeing the kindness and generosity of people in the special needs community. It's unfortunate that we didn't get to see this part of people until being parents of a child with special needs, but we are always moved by watching families, friends and organizations come together to help one another.

If you know of anyone who could benefit from Jeremy's charity..please contact him. He's backed up until summer with the charity. Unfortunately, he has to do his paid work to keep us afloat, but he will always find time to schedule in more murals for Castles In Air.
www.castlesinair.org

So much love,
Kristen

Posted on April 23, 2014

Posted on April 23, 2014

I made a video that I posted here. While it may not have a lot to do with eds..it's basically the reason why I did the fundraiser in the first place, to be able to be the best parent possible to Julianna. She's amazing..the video is the best way to show others a little about autism..the purity, the happy times and the rough times as well...I hope you enjoy it.

Posted on April 18, 2014

Posted on April 18, 2014

Again, it's not easy to keep up with updating like I wish I could. Julianna went in for surgery last week to remove her adenoids and there was much more tissue than expected. The surgery was very successful, but her ent still thinks this could be central sleep apnea. Now we just wait and see. She slept good for a couple nights, but is getting up for hours at a time again. It's hard..when I don't get enough sleep my eds symptoms are so much worse, sometimes mimicking the flu. I've had a lot of migraines and swollen joints and my first true hip subluxation. My hips and knees get sore alot, but seem to be more wobbly lately. Luckily, I have been fortunate enough to have the funds to buy a lot of things to help me.
This fundraiser has enabled me to get a wheelchair, braces, shoes to fit over the braces (I had to get rid of all of my shoes), two orthopedic sports bras, two orthopedic shirts, a full bodysuit back brace, a blood pressure machine, a tens unit, bracing for my hips, ring splints..I even bought an adult tricycle to try to get some exercise. It's the first time I have been able to ride a bike due to my balance issues so it's pretty exciting. I did realize that I now need soft wrist and knee braces after a quick bike ride so I think I will pretty much be braced head to toe, but if that enables me to get some exercise and have more endurance than that works for me :)
I wanted this to be a better update, but I am exhausted and have a migraine so I apologize if I am rambling or if this is getting long.
I am so thankful to friends, family and strangers who have reached out and selflessly and generously donated to help me and my family. Of course the same to those who didn't donate, but read about eds, autism, cerebral palsy...thank you for taking an interest in our lives and please know what a difference you have made. I guess I don't quite have the words to accurately express my gratitude, but this was me trying my best.

thank you so much!





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