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 







4.19.2015

My best friend Jennys Bachelorette in Vegas

I am so excited to be able to blog about a really amazing weekend in Vegas!

I do have to share one bad thing about my trip but this is the only low of the whole trip! While I was headed to Vegas on Thursday morning for my best friend Jennys Bachelorette with my mom and Liz, the women who was working said to me cant you stand still when I was going through security, and due to my HD I could not stand still. She mumbled to herself I guess not. Situations such as these were people are so clueless to people with disabilities is the entire reason why I blog and share my story with the world. People need to be aware simple as that.


With that situation at the airport I was not sure how my friends were going to treat me or act when I saw them. Jennys entire bridal party restored my faith in humanity and greatly helped my feelings of being lonely disappear! They treated me as the same person they have always known and loved. For the first time in a long time I felt like a young and crazy 24 year old. They treated me normal which made me feel normal. My syptomns  were great becuase I was beyond happy and I kept up with my friends and partied all hours of the day. I was proud of myself as was my family and friends! I deeply needed that trip and feel like a new person! My words will never be enough for every thing the bridal party did 
for me but thanks for making me feel like myself again. 


On Thursday I got there in the afernoon and was so excited to see everyone! That day we did some shopping, and Jenny opened her lingerie gifts from us and we had champagne and cake. That night we went to an Italian restaurant and then the casino were we stayed at Ceasers. On Friday I went to breakfast with my mom and sister, then the bridal party went to the pool at Cosmo and got a cabana we had so much fun there we did not leave until 7 pm. That night we went to Mexican restaurant and then the Marque night club. We had so much fun at the Marque!! We danced and they sprayed confetti-it was just crazy. The Marque had my favorite sign in all of Vegas it said you not in Kansas anymore!! There were a few moments that night were I was dancing looking around at all my friends who are so supportive of me, and I felt completely fearles and invincible. I was so happy I almost cried. The next morning  I went to breakfast with my mom and Liz.  I met up with the    bridal party and we went on this amazing Ferris wheel ride were we could see the whole city! then we sat by our pool at Ceasers and went to dinner at Tao. 






When it was time to say bye to them I cried and cried, they did too, as did my mom and Liz who were beyond thankful for them making me  happy. I told them I loved them and thanks for being so good to me which made us cry more.


I do want to be explicit and say I could not have gone without my mom and Liz who came to help me travel, and share a hotel with me so I could get sleep. They used their hard earned money so I could go to my best friends Bachlerottte Party because they knew I needed it. I will never be able to thank them enough and I love and appreciate them for it!


I had more fun and my symptoms were better than I could have ever imagined! On my hard days in Abington when I am feeling lonely I'm going to remember this trip and that I have the greatest Kansas friends. Even though  we are 100s of miles away from eachother the friendships are just as strong as when I lived in Kansas and I love that.

Thanks to my mom, sister, and bridal party- I'm so grateful for each of you and love you,
Alex



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