5.16.2015

Huntingtons Disease Awareness Month: Family is Everything

May is HD awareness month! ��

The HDSA motto is family is everything because HD is a genetic disorder that affects families. In my family  8 out of 11 of my Dads siblings have the HD gene that their father also had.  Many cousins either have the gene, or are at risk. HD has put a huge weight on my family's shoulders. Even the ones who don't have the gene are affected when they have had to watch their father suffer and now siblings. We would not make it with out each other to lean on the hard days and to us family is everything.

My Grandma, the mother of eight kids with Huntingtons Disease, had a huge burden to handle, and she did it all with grace and faith. At least twice a week she was driving someo one into Boston for HD research, driving to Tewsbury to visit them in the HD Unit. As hard as it has been for my mom and Liz since I have also been diagnosed they can't fathom doing it eight times over. My family was recognized by the HDSA as family of the year and my Grandma was very deserving of that award. My Grandma has passed but her legacy lives on in my Aunt Mary. My Aunt is everyones advocate, she comes andgets me once a week, and my cousins visit. She tells me stories about our family, and we talk about HD research and our hope and faith for a cure. She keeps my faith alive, keeps me smiling, and I could cry thinking about what she means to me. My Aunt and Grandma are without a doubt HD saints.

 I would not have gotten through my diagnosis without my mom and sister.My sister has moved her whole life here from Chicago, and she has taken every Friday off of work in the summer to spend time with me. My mom reminds us to keep smiling even when it's hard and pray everyday for a cure. They both have my heart, are my best friends and I am happy when I am with them.


I have been raised to believe family comes first and family is everything and I without a doubt believe in it. When I was beginning to show signs of HD my mom moved us from our home of 15 year Kansas to Boston to be with her family, have them there to support us because family is everything to her, and we needed them to get through it.



As you can see to me family is without a doubt my everything.


If your a blog reader who has been touched by my story and your not sure what you can do.

1.Email me I would love love to hear from you
2. Tell my story to someone and help raise awareness 
3. Donate to the HDSA




 I have been smitten with sharing my journey in order to raise awareness for HD!


Thanks for reading,
Alex




4.27.2015

Stella and Dot Mothers Day Gifts ������♥️��




Stella and Dot items can make the best gifts, especially Mothers Day Gifts! Choosing S&D as a gift is thoughtful and heartfelt.  ♥️

Here are some great gift ideas!!

Shop the Unique Boutique for a personalized gift! One great gift idea is to engrave the date of  the anniversary, and then add the birthstone or initial charm of kids and grandkids. Another idea is to engrave the initials of your mom and add memorable charms. There are many charms and engraveables to choose from so be creative!
 Another idea is the Capri Tunic  for Moms and Daughters ages 6-12. It is one size fits all!! Capri Tunic is a great beach cover up! �� $89 for Women and $59 for little girls!

Two more great ideas are the Love and Hope necklace each $39


!


An amazing gift idea is the Getaway Bag and my personal favorite bag! It has a zip out for extra storage!! ��♥️�� Getaway Bag is $138!!
last but not least there is the Keep it the bag. It's the diaper bag and comes with a changing pad!
It's on sale for $98!


My Stella and Dot Link is on the right side of my blog!! Check out the Mothers Day boutique for more  ideas!Place orders by 5/4 for them to arrive by mothers Day! Please contact me with questions- maryandalexiewels@gmail.com

Alexandra 







3.31.2015

Dance for a Cure

Today's post is more positive than my previous post- I just had to get all  my feelings out on my hard winter and now I am back to posting positve and happier post.

My friend Seth, the NYA Presidnent had organized a fundraiser for the HDSA called Dance for a Cure. I attended the dance along with my sister, her boyfriend, my mom. Stepdad, Aunt, Uncle, cousin, his 
wife, and  most of my dads family. Thank you all for coming and supporting me! It was a really amazing event. 

The turnout was outstanding for the first year having the event, and they had over 100 people there!! Events such as these were there are that many people out fighting to raise awareness and money for a cure keeps  my hope and faith in a cure alive. My whole reason for doing what I do, having my blog and sharing it with the world is in hopes of a cure. The fight in my friends in the HD community, such as Seth remind me to hold on. I believe in making the impossible possible and in miracles.


Seth had been planing his event to raise money for a cure of HD for his mother, she sadly lost her Huntington's Disease battle the week before his event. This made it that much more emotional for Seth and my thoughts and heart were with him the entire night. I just wanted him to know how beyond proud and impressed of him everyone I was with was because of how young he is an amazing event it was. I knew the first time I met him he was special and committed to his cause- finding a cure for HD. He won't stop fighting until there is a cure and neither will I!



��Help for today and hope for tomorrow ��
Alex




3.27.2015

Hard Days

So when I started my blog, I promised myself to share the good and the hard of my disease in order for it to be therapeutic for me and in order to raise awareness and be an advoacate.


Sometimes you have to take the good and the bad in life and with my HD and this week has been really hard for me. I'm dealing with hard realizations that most likely I am going to be alone in this journey. I have realized that I won't be able to get married and have a family as everyone around me is. That's a harsh reality for me a 24 year old to deal with becuase that's all I wanted in life and the HD is taking that from me.

Another hard thing for me to also deal with is that there are people who I believed would be beyond supportive to me have not been seeing me, or messaging me to see how I am. I feel as if some people deal by pushing me away when I need them to pull me in. I just feel extremely alone and lonely lately.

I do want to say there are people who are busy in their own lives but constantly making time for me and we are closer now that I am sick. I wanted to thank these people specifically- My entire Dads side, the Freniers,  my cousin Chelsie, my best friends Jenny and Emily, my Kansas family,  my sister friends, and of course my sister Elizabeth, her boyfriend Alex, my mom and Step dad Ken. I love all of you and appreciate what you do for me. You got me through this crazy winter!!



There are days when I feel so lonely here and deeply miss my friends that I say I wish I still lived in Kansas. I feel like all of my friends here have pulled away lately when I really need them. 


Let's just say I am feeling hurt by a lot of people in my life. I understand Its hard for them to see me but it's ten times harder for me to do this and fight this alone.  


I have had a lot of long talks with my mom  and sister about this lately and my mom said blog about It so I am so grateful I did. It got my thoughts and frustrations out.


Thanks for reading
-Alex