Taranaki Mum (Kylee Boyes-Price) with MS clings on to hope for a future with her 4 young sons
Kylee, a young solo mum of four boys, is suffering with MS. Treatment in Russia will give the family hope and a future growing up together.Taranaki
Hi, Many thanks for taking the time to read this givealittle story about me and this life altering medical condition I have.
I'm 32, a solo mum of 4 boys, Kurt (almost 15) James (almost 13) ... so yes, 2 teens! Josef now 10 and Nash is now 3. I was diagnosed with MS a few months after giving birth to my youngest son in April of 2016. Initially my symptoms were diagnosed as stress related and depression after my husband left and the baby was only a few weeks old, but my body continually crashed; the right side of my body was becoming increasingly weak, and I would drag my leg. At times I was unable to walk and would require support of the walls to get me from room to room. I struggled to lift the baby, developed double vision, temporary blindness and imbalance and vertigo. I was unable to drive, developed extreme muscle pain and pins and needles that caused pain. Loss of feeling in the soles of my feet and numbness in several toes. An MRI was ordered, and in December 2016, I was diagnosed with MS - relapsing and remitting.
Multiple areas of abnormalities are within the spinal cord and upper thoracic cord.. We were all in shock initially.
March 2017 I had another relapse which then qualified me to apply for disease modifying therapy.
I had to give up breastfeeding as my medication was going to cause side effects.
Fatigue is one of my worst enemies. Lifting becomes a chore, my brain becomes 'foggy' and I don't say my words properly. I want to be a great mum, supporting the boys in their sport, schooling and caring for them as a full time mum should. I want to be normal again, I want to wake up every morning and be glad I'm alive; at the moment I fear living as much as I fear dying.
My big chance is with stem cell treatment in Russia. There is a huge cost involved, $100,000. This operation sounds scary but I can do this with your support. It first harvests my stem cells, then treats, freezes and stores them ready for reintroduction after chemo. I've got a couple of weeks after that in isolation before I come home, and then, I need a lot of recovery time. It means a long time without seeing my kids, and when I get back, there is probably more time after that. There are a lot of safety precautions to follow post transplant. I have to do this, not just for me, but for my family.
The success rate is very high, I'm willing to take the chance if you are! I must get back on my feet, literally.
Your support and contributions no matter the amount, will be gratefully accepted. I thank you in advance.
All surplus funds will be donated to the MS Society for another person needing funds for the same procedure. Everyone needs hope and this treatment is giving us that.
glennys price's involvement (page creator)
I am Glennys, Kylee's Mum, and it is with great hope that our fundraising efforts are successful for a positive and long life for her with the boys. We need Kylee in our lives, as a Mum, daughter, and sister. Her future needs to be positive and happy, not one of dread and fear.
Use of funds
The funds will be for return airfares, the HSCT treatment in Russia, Support person and other travel related expenses.
Our fundraising is still ongoing, with various raffles, quiz nights, fashion shows and even a couple of movie nights. We had an incredible donation from a team in Macau, House of Dancing Waters. They had a fun night, just for us. After the amazing gift of 150 ball gowns, our balance is slowly creeping up, but we still need to persevere without any hesitation. Our funds are for the airfares, treatment and other related expenses to get to Russia return. Our target is $100k, the sooner we reach this, this sooner the treatment starts and life continues for a mum and her boys. With generous donations to date, we have raised $32,000. It's a powerful reminder of the public being kind, thoughtful and giving. Thank you so much everyone.
Please note, that in the unforeseen event that Kylee is unable to travel, we will transfer all the funds to another MS recipient who is wishing to have this treatment.
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This page was created on 4 Dec 2017 and closes on 4 Jan 2020.