March 16, 2018
I’m so sorry it’s been so long since I’ve updated on Jenny’s family! I’ve been so busy!...
Her older sisters Zoey and Riley are doing amazing! They are growing up way too fast! Zoey played volleyball last semester for her school and did amazing! She even got a winning points for a game! She is also in glee club and just tried out for her first duet! I’m hoping she gets it but I’m just so proud of her for going for it! She is coming out of her shell more and more! Riley has been in art club and book club all year and loves both!
Travis is doing great! He’s still a security guard for the same company and is still in the army reserves! 🙂
I’m doing great as well! I’m in my 4th session of my 3 year BSN program! As and Bs! I’m so proud of myself and loving the program!!!!
Thank you for your continued support! I’ll be posting a video in the next couple of months! I’m very excited to share something with you!
August 28, 2017
I thought I'd give a quick family update before life gets very chaotic as we have a lot of changes starting.....today!...
Travis-last month he got promoted to supervisor after being with the company for only a little over a year! He's been working insane hours but it's worth it!
Zoey- She started 4th grade at the beginning of Aug! She loves it! She also started volleyball last week! We got to see her second practice on Friday......she's a natural! She's never played before and is doing amazing!
Riley- She started 3rd grade! She's doing amazing!!! She started art club last week. Riley is very artistic so it was a no brainer that she'd pick art club!
Me!- In March I told my job I wouldn't be returning in Aug. Over the summer I applied for nursing school, took the HESI, and worked very hard to get my dream to come true! Today I start nursing school!!!! I was accepted into a 3 year BSN program! This includes my pre-reqs, nursing classes, clinicals; everything in 3 years! It's gonna be a hard 3 years but I'm so excited!!!!!!
If you don't see any posts for 3 years, please know I'm just super busy juggling 2 kids, 2 dogs, a house, and school!
Thank you for all your prayers and support with everything we've been through.
Doctors think this little boy has Mito. He's being tested for Mito tomorrow. His parents are doing everything they can but the medical bills are getting to be too much. Any donation amount would be greatly appreciated. If you can't donate, please feel free to share! Prayers for this sweet little boy and his family are appreciated as well!
I can't believe May starts on Monday. As May approaches, I find myself thinking more and more about Jenny; the impact she had on my life and her fight. She taught me so many things. I wish everyday she was here with us.
A couple weeks ago, the girls school sent home a note about kindergarten. I looked at it and immediately got upset. Jenny would be starting kindergarten in Aug. These big milestones that Jenny will never have are the hardest for me.
May is 3 years without ou...r sweet Jenny. So many things have changed. We moved to Az, Travis got out of the Marine Corps, he joined the Army reserves, he had many jobs before finally staying with one (security guard), I've been working at the school for 2 years now, the girls are growing fast and doing well in school. We are living with the pain of losing her. It's not easy but somehow we are doing it.
When Jenny was dying, I made her a promise. I would live my dreams for her! My dream is to be a nurse.....specifically a PICU nurse. I'm happy to say, I'm finally going for it! I told the school I won't be back in Aug, I have a spot in the CNA program at a local college. I will be going for my RN once I get my CNA. I'm hoping to get a position as a CNA at the children's hospital.
Jenny, there are no words to describe how missed you are. We love you!
Today starts Mitochondrial Disease Awareness Week!
What is Mitochondrial Disease? Its a disease that affects your Mitochondria. Mitochondria creates energy. When a patient has Mitochondrial Disease, their Mitochondria can not create energy the way its supposed to. Most Mitochondrial Diseases are terminal. This disease affects all ages but mostly children. There is no treatment, no cure….sadly its a death sentence for most.
My daughter Jenny had a Mitochondrial Disease called ...Alpers Syndrome. She was a beautiful healthy baby girl then on April 18, 2013 I found her in her crib stroked out but I didn't know she had, had a stroke. It took hours to realize there was something very wrong. I thought she just didn't feel well since she had thrown up. The ER drs couldn't get her to stop seizing so they intubated her and transferred her to Balboa Naval Hospital. The next day we found out she had, had a stroke. She spent weeks in the PICU on life support fighting for her life. It was a horrible roller coaster ride we desperately wanted off of. A month later she was sent to a different hospital for rehab where she had a 2nd stroke. She was in the PICU on life support again, fighting for her life again. At this point the drs knew there was something wrong; no child has 2 strokes in a months time. They ran genetic tests. This is when we were given the devastating news that our daughter was going to die of an awful disease….Mitochondrial Disease. She fought for a year; in and out of the hospital, on and off life support 12 times. In April 2014 Jenny had a bad asthma attack but somehow survived. The day after she got home from the PICU, she had a very bad seizer I couldn't get to stop. As I stood by the couch watching paramedics get her hooked up to machines and trying to get her siezer to stop, I knew, this was it. A few days later the seizer still hadn't stopped. It was worse than any seizer she had ever had. The drs had her loaded on meds and nothing was working. On May 15, 2014 my husband and I made the hardest decision of our lives……we were gonna let our beautiful 2 year old daughter go. We pulled life support that afternoon. Jenny passed away on May 16, 2014 at 4am.
No parent should have to watch their child suffer! No parent should have to bury their child! We need to raise money for this awful disease! We need to find a treatment and a cure!
You can donate to the United Mitochondrial Disease Foundation! UMDF.org.
You can participate in the fundraiser I am putting on through Usborne Books & More! Go to my website n5302.myubam.com, fill your cart with the books you want to purchase for your reader(s), when checking out make sure you click on the party Mitochondrial Disease Awareness Week. All of my commissions from orders placed between Sept 18-24 will be donated to UMDF. And every person who places an order this week will receive a raffle entry! On Sept 25th one of my girls will pick a winner!
Please help me cure this disease!
This is the fundraiser Im doing on my Usborne Books & More website. My website is n5302.myubam.com. Please help us cure this disease!!!
Its September! Mitochondrial Disease Awareness Week is Sept 18-24! What is Mitochondrial Disease? Its a genetic disease that involves the Mitochondria. Mitochon...dria gives you your energy. When you have Mitochondrial Disease, your Mitochondria doesn't make energy the way its supposed to. Patients loose their energy pretty fast and then there comes a time they don't have the energy to live anymore and pass away.
This is very important to me. As most of you know 3 years ago my youngest daughter Jenny had 2 strokes and was diagnosed with Alpers Syndrome which is a Mitochondrial Disease. She passed away 13 months after her first stroke. She was 2 when she passed away. This disease has no treatment, no cure….the patients have no hope. I promised my sweet Jenny I would do everything I could to help get a cure for the disease that took her away from me.
All commissions earned from Sept 18-24 will be donated to the United Mitochondrial Disease Foundation! But thats not all!!! All people who place an order THAT WEEK ONLY will be put into a raffle for a free book! If you host a party that week, you will get 5 raffle entries! The more money we raise, the bigger the prize will be! There is no specific amount you have to purchase to be entered into the raffle….you just have to place an order. My goal is to be able to donate $200 to UMDF! Thats $800 in sales….I know we can do this! Please go to n5302.myubam.com to place your order of Usborne Books!!!
I created an event on my website for Mito Awareness week. When you check out, it will ask you to choose a party to order from. Click the down arrow and click on Mitochondrial Disease Awareness Week. This will help me keep track of the orders for Mito.
Please remember, in order for your purchase to count towards this, your order must be placed between Sept 18-24! I will pick a winner for the raffle on Sept 25! If you would like to earn 5 raffle entries, please message me or comment below to schedule your party! If you are in AZ and would like to have a home party, we can do that
Feel free to share this post!
Aug. 20, 2016
Hello all! I hope you are all doing great!!!...
I thought Id give a little update since I haven't posted on here lately.
The girls started school 2 weeks ago. Zoey is now in 3rd grade and Riley is in 2nd. They are both doing great so far and love their teachers. They had a blast over the summer doing tons of crafts, taking swim lessons, going to the splash pad twice a week, playing outside, and celebrating their birthdays. Zoey is now 9 and Riley is 7.
Jenny's doggies are doing good. They are both still very spoiled.
Travis is doing great! He is loving his job with the security company! He just re enlisted into the Army Reserves and is talking about attempting to go active. He finally goes to MOS school (job training) next month….Im assuming if he loves his new job, he will be trying to go active.
Im doing ok. Ive been having several medical issues the last year and finally got answers this summer. I found out I have an arachnoid cyst in my brain that needs to come out. So Im working on seeing a neuro surgeon. I started selling Usborne books over the summer to try to bring in some extra money. Im still the lunch lady at my girls school.
Thank you all for always praying for us and supporting us. We hope you all had a great summer!!!
Next month is Mitochondrial Disease Awareness Week! Sept 18-24. I will be having a special for Usborne Books…..for every person who places an order THAT WEEK will get their name put in a raffle. At the end of the week, Ill pick a name and that person will receive a free gift. The more money raised, the bigger the prize will be. Anyone who hosts a Facebook party that week, gets 3 raffle entries! And if we make $1000 in sales….Ill pick 2 winners!!! All my commission made that week will go to the United Mitochondrial Disease Foundation. You are welcome to take a look at my website now and ask any questions you may have now. Please remember, the raffle entries will only be given for those orders placed between Sept 18-24.
May 18, 2016
This month has been very hard for our family. The anniversary of pulling life support, Jenny's 2 year angel anniversary, the 3 year anniversary of Jenny's third stroke. Lots of hard memories but we survived....
The girls last day of school is next Tuesday. They are very excited for summer!! They both have done so well this year getting straight As for most of the year. Zoey had a small bump in the road around Christmas that lasted a few months; her grades dropped and they were discussing retention but with tutoring and lots of confidence boosting her straight As have returned and she's doing much better! She's looking forward to the 3rd grade. Zoey won 1st place in her class for the read a thon her school just had. Riley has been doing amazing! Her grades have been awesome all year and is way too smart for me! lol! She can't wait for 2nd grade!!! She's already trying to read chapter books
Travis is doing great! He's been with the Army reserves since Aug and loves it! He'd love to go active with the Army but theres lots that needs to happen before he can try to do that. He got a job as a security guard a few months ago and loves it!!! Its so nice to see him come home from work with a smile on his face.
I am doing pretty good. Working and being a mom has been a huge change but I love it! Its a great feeling helping with our finances. I loved staying home with the girls when they were little but now that they are in school, its awesome to be back in the working world. I am still the lunch lady at the girls school. Its so great seeing them everyday and knowing so much about their day and what they are up to.
This summer we plan on going to the zoo (we got a zoo membership over spring break), doing lots of crafters, playing outside and hopefully go to Disneyland (as long as money holds out).
Thank you for always supporting us and loving us. We all hope you all have a wonderful summer!!!!
The Mito Walk and Roll 5k website closes tomorrow!!! Please get your donations in today! Team Go Jenny Go! Just $1 would go a long way! Please donate for Jenny!!!! Show her we won't give up finding a cure! Show her we will find a cure!!! It takes a village to raise a child…..it also takes a village to save a child's life!!!
2 years ago today Travis and I held our sweet baby girl as she took her last breath and grew her beautiful angel wings.
Saying goodbye was the hardest thing we have ever done. Leaving that hospital together without Jenny was almost impossible. Calling mortuaries and making plans for her body was something I never thought I'd ever have to do; something I never wanted to have to do. Somehow we survived. When we were told Jennys diagnosis and that she would die, I told that dr ..."she can't die because I can't live without her! I can't bury my kid!" I get up everyday, shower, get my kids to school, go to work; I do it all for her. There are days I just want to stay in bed and cry all day but then I look at her pic and say "I know I know, I'm getting up!" And I get up.
Jenny taught me so many things in her short life. Jenny changed me and so many other people.
Jenny was so strong and such a fighter! She smiled through everything. She came out of a skin biopsy and I thought she'd be screaming but she wasn't and the dr looked weird so I started to freak out. That dr came up to me holding my daughter and said "I just saw something I've never seen before. She smiled and laughed through the entire biopsy." Jenny got me through her illness.
I miss her every second of everyday but we know she's with us. And one day, I'll get to see her walk up to me....one day!
Jenny's 2 year angel anniversary is on Monday. As I sat here wondering how we could honor her and remember her, I remembered the Mito Walk and Roll 5K in La Jolla, CA is next Saturday. What better way to honor Jenny than to donate to Mito research?!?! Mito research will not help Jenny but it will help so many other children. And I promised my daughter I would help find a cure…..so I donated. I wish I could be at the walk this year but hopefully next year.
Did you know Jenny? ...Were you one of the lucky ones that got to see her beautiful smile and hear her beautiful laugh? Want to honor that beautiful girl? Go donate just $5 to her team Go Jenny Go! Lets show our girl we still love her and support her disease.
Didn't get to meet her? Didn't get to see that beautiful smile or hear that beautiful laugh? Have you only heard stories and seen pictures? Want to show Jenny that you love her anyways and support her disease, go donate just $5 to her team, Go Jenny Go.
Want to make a difference in someone's life? Every penny raised makes a difference!
Lets cure Mito! Lets do it for Jenny!!!!
It's World RARE Disease Day!
If you are not hosting or attending an awareness event, and are looking for a simple yet effective way to advocate, #ShareAboutRAR...E on social media using #WRDD2016 today! Over 350 million people worldwide are affected by rare disease, show your support by calling attention to the community!
Rare Disease Facts: http://bit.ly/RAREfacts
Social Shareables: http://bit.ly/WRDD2016Awareness
The Mito Walk and Roll 5K is coming up again!!!! Im still trying to figure out how we can be there. If you are able to go walk for Jenny, heres the link! We are team Go Jenny Go!!! Lets help find a cure for the disease that took our sweet Jenny from us. Lets show Mito its not going to win!
Oct. 6, 2015
Hello all! I hope you are all doing well. The holiday season is fast approaching so Im gonna be very busy soon, so I thought Id post a quick update now. This will probably be the last update of the year....
Travis and I are both doing great with our new jobs! We are both happy where we are! Travis is loving the Army Reserves but still really wants to go active….fingers crossed its possible in about a year
The girls are doing amazing in their new school! Switching schools was the best decision I have made in a very long time. They both got straight As on their progress reports! Zoey has struggled in school especially in math since Jenny got sick but that kid got an A+ in math! I cried when I saw their grades! We have conferences next week but I already know what will be said…I love working at their school
We have a lot planned for the next few months
We are getting family pics taken for the first time since before Jenny passed in a couple weeks. We are taking our girls to a pumpkin patch that same weekend. Then tons of crafts and baking for Christmas
And Jenny's 4th birthday is in January. We decided the best way to celebrate is……to go to Frozen on Ice!!!! She loved Frozen so I bought tickets this past January!!! We go the day after her birthday!!! We are so excited!!! We will also be sending off balloons to her!
Life isn't easy but we are very blessed.
We hope you have an amazing rest of the year!!!!!
Thank you for all your support and love!