Xander's Pals

03/13/2023

Today is Trisomy 13 Awareness Day. Trisomy 13, also called Patau syndrome, occurs in about 1 in 10,000 to 16,000 live births each year worldwide. Trisomy 13 is associated with more severe IDD and multiple physical problems, including serious heart problems.

To raise awareness, each March on the 13th people across the world wear yellow today to show support for Trisomy 13 Awareness Day! We love our Trisomy 13 warriors & their families!

If you know of a family who has been impacted by a diagnosis, please take the time out today to let them know you are thinking of them! Your words of encouragement really help these families know they are not alone!

03/07/2023

It’s been 3 years today since we last had an opportunity to see our beautiful son! We continue to remember him in so many ways. It’s amazing to hear how he inspired so many lives. Even to hear he helped bring people to discover their faith & become closer to God! We don’t always know the reasons for what happens, but He does! Even 3 years later we still continue to walk by faith.

March is Trisomy awareness month! Please check in with those who have been impacted by this condition. Your support means more than you know!

In the upcoming months our organization will be going through changes including an expansion of our board. Our hope is to build upon the foundation we have layered by bringing in experts in certain areas who can continue to help our foundation make a greater impact in providing more resources for families impacted by a diagnosis. Please pray for us during this time of transition!

We thank you all for your continued support!

01/16/2022

Happy Heavenly Birthday, Xander! It’s been two years since we like to believe we were able to experience firsthand God’s miracles. This day was full of emotions not knowing what the days to come would bring. Not only were we blessed with days, but you would stay with us 7 weeks before being called home. We will forever have a hole in our hearts from you not being here with us. But, you changed our lives for the better two years ago. Our perspective on what’s important & what’s not so important has changed. The meaning of love was flipped upside down. Stronger bonds were formed with existing people & new people we hadn’t met before you. More importantly our faith grew stronger, our walk/relationship with God blossomed to a level we’ve never reached before. A truly intimate, frustrating (it’s ok to be frustrated w/ God 😊), beautiful, difficult, but the most loving relationship we could ever have.

Some days we laugh. Some days we cry. Some days we’re weak. Some days we’re strong. Some days we reminisce. Some days we can’t. (your Dad still can’t look at too many pictures or videos because it’s too hard for him, but one day he’ll get there 😊) Everyday we miss you. Everyday we put our best foot forward. Everyday we try to love people. Everyday we try to pour into people. Everyday we tell you goodnight. Everyday we tell you we love you. Everyday you are in our hearts. On January 15th, 2020 so many lives were touched because you were given to us. 7 weeks that are engraved in our hearts forever.

Until we are together again, we know you are working in our lives alongside our heavenly Father. Today we celebrate you Boog! We love you, son!

Side note: We originally hopped back on Facebook to keep everyone updated about Xander two years ago. Throughout the two years we appreciate all of your love & support! Everyone means so much to us! We love you all dearly!

Life has thrown us some curves this last year, so we had to slow down a bit with the foundation. However, we continue to work with families and other organizations to support families across the Panhandle. Stay tuned for future announcements about our organization!

12/10/2021

We had the pleasure of attending a holiday grief session with our friends from BSA Hospice of the Southwest! So humbling to hear everyone’s testimonies this evening. We have said it before, but we have a special place in our hearts for this organization. The support they provide to families is an amazing service. Such a wonderful group of people that do amazing work day in & day out!

10/15/2021

Pregnancy and Infant Loss Remembrance Day is an annual day of remembrance observed on October 15. Today is a day to reflect on how precious life is & how quickly lives can change forever when families experience pregnancy loss and infant death. For these families, every day is an upsetting reminder of what they have lost. However, we hope that parents who have experienced such loss use this day to provide a chance to dismiss any social barriers or shame experienced and encourage them to receive the support they deserve. Know that you are not in this alone, do not let your voices be silent! Today, & every day, we remember, we care, we stand together. We send our love to all of those impacted by such an enormous loss. ❤️❤️❤️❤️

08/10/2021

We were honored to be able to assist Frames of Love & this special mother! Carol will always have a special place in our hearts as she & her team were able to make time stand still while we had our beautiful son with us. The moments she captured through her lens are some of the most genuine times that we had with Xander. Please take the time to learn more about this amazing organization that truly offers an amazing service. We will be forever grateful for this organization!

We want to thank everyone who contributed to helping the sweet mama with the Trisomy 18 baby recently! She was able to get what she needed, plus some! You all are wonderful!

We wanted to give special thanks to Xander's Pals for all their help! Xander’s Pals was founded by one of our past mamas who lost a Trisomy baby (Xander) of her own! They provide resources of all kinds to families with a Trisomy (& other terminal diagnoses) baby. Go check them out & show them some love!

08/02/2021

Wow, it's hard to believe that a year ago we celebrated the founding of Xander's Pals! What an amazing evening it was that ultimately set us up for what was to come over the next 365 days. Over the past year we have been beyond blessed to work with so many special families & kids. God willing, we will have the same opportunity to work with even more families & kiddos as we move into year two! Some have asked recently why has the page been so quiet? As a faith based organization, our obedience in listening to God's word is of upmost importance as this is the foundation to our foundation. Over the last several months the foundation has opened our hearts to this scripture:

Now then, stand still and see this great thing the Lord is about to do before your eyes!

As we step into year two, we're excited to see how God leads this foundation! Short term improvements are coming along with long term planning is ongoing to ensure our foundation is able to serve those in need for years to come! Rest assured our work always continues behind the scenes!

A HUGE THANK YOU for everyone's support over the last year! More importantly, an even bigger thank you for helping us support these amazing families! We love each of you!

05/07/2021

Happy Nurses Week to so many of our family & friends! While we know far too many to name personally, we want to thank you & your colleagues for the many personal sacrifices you make to provide compassionate care to us all! You all have a special place in our hearts! We hope this week, & beyond, you are recognized as being real-life super heroes! We couldn’t agree more with the quote below! Much love to you all from Xander’s Pals! ❤️ ❤️

04/02/2021

Thank you to everyone who sent messages, texts, comments, etc. for National Trisomy Month! While we didn’t hold an event due to Covid, we’re hoping next year we’ll be back to normal to where we can recognize Trisomy awareness month with our community!

On a different note, if you know our family you know we love baseball! Opening Day in baseball was yesterday, but isn’t official in our family until the Red Sox play! Today is officially when we celebrate Opening Day! And just in time the foundation received a package from Boston! Hmm, wonder what’s in it? Coincidental it’s Opening Day for the Red Sox?! Stay tuned for more big announcements! Thanks to all that continue to share our page! ❤️ 💙

03/18/2021

We continue to educate the public about the Trisomy disease. Today is Trisomy 18 Day. Trisomy 18, also called Edwards syndrome, is a chromosomal condition associated with abnormalities in many parts of the body. Individuals with trisomy 18 often have slow growth before birth (intrauterine growth retardation) and a low birth weight. Affected individuals may have heart defects and abnormalities of other organs that develop before birth. Other features of Trisomy 18 include a small, abnormally shaped head; a small jaw and mouth; and clenched fists with overlapping fingers.

Xander's Pals stands behind these families today, tomorrow & in the future!

03/13/2021

March 13th is Trisomy 13 Awareness Day. Trisomy 13 is a type of chromosome disorder characterized by having 3 copies of chromosome 13 in cells of the body, instead of the usual 2 copies. In some people, only a portion of cells contains the extra chromosome 13 (called mosaic trisomy 13), whereas other cells contain the normal chromosome pair. Trisomy 13 causes severe intellectual disability and many physical abnormalities, such as congenital heart defects; brain or spinal cord abnormalities; very small or poorly developed eyes (microphthalmia); extra fingers or toes; cleft lip with or without cleft palate; and weak muscle tone (hypotonia). Most cases are not inherited. Trisomy 13 is diagnosed based on the symptoms, clinical exam, and confirmed by the results of a chromosome test.

A year ago we came together to recognize this day as well as remember our Xander who was diagnosed with Trisomy 13. Yellow has quickly become one of our favorite colors! Our hearts go out to all of the families who have had, or has, a child with T13! Much love from our foundation.

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03/10/2021

Today is Trisomy 9 Awareness Day!!! 💜💜💜

Meet our pal Lenny! Lenny was diagnosed around three years old with trisomy 9 mosaic or T9M. T9M is a very rare chromosomal disorder and we have only found around 200 other T9M children around the world!

The term mosaic means that some cells have the extra chromosome, while other cells have the normal two chromosomes. Only 25% of Lenny cells are affected but doctors have no way to figure out which cells those are. Lenny was a preemie, NICU baby and she has been going to therapy at the Turn Center since she was 6 months old. She will most likely continue speech therapy most of her life but is starting to talk up a storm! Hearing her talk is one of the best things her family could ask for because when she was diagnosed we were told by many professionals that she would never be able to speak. She also has occupational therapy but did graduate physical therapy last year. Lenny graduating physical therapy was a HUGE mile stone for her and her family couldn’t be more proud of her for BEATING THE ODDS!! 😍

With T9M, comes developmental delays and physical delays, she has a growth deficiencies and has or has seen pretty much every specialist there are for many issues with organs or bones. Currently Lenny’s biggest obstacle is her scoliosis and kyphosis. She sees an amazing orthopedic surgeon every 3 to 4 months, wears a back brace to help keep her scoliosis from getting worse and the brace will hopefully delay surgery as long as possible.

Lenny is a sweet and sassy 7 year old girl who loves going to school and spending time with family. Her parents would say that FAMILY is Lenny’s favorite thing! She looks forward to spending time with cousins, grandparents, aunts, and uncles and this is something that has always brightened her days!! Lenny also loves everything Elsa, swinging in the backyard, going swimming, and of course she loves watching her iPad.

She is such a special girl that brings joy to so many and her family wouldn’t change one thing about about their baby girl! 💜