Our family has always been grateful for all that is done for us.  We have such an amazing support system of family and friends.   People that have laughed and cried with us.  Karina is only 5 years old but her spirit seems to have been around forever and she has touched so many hearts.  We feel that Karina is bigger than anything we can imagine.  Sometimes I feel that she is closer to God than we are. With all of her issues, and all of her pain and difficulties, she smiles throughout.  Her strength overcomes.  She has taught us an overwhelming sense of love, strength, hope, acceptance.  We have learned about a whole new world called special needs, handicapped, disabled....etc.  Along with that we have had the opportunity to meet a whole new group of wonderful people, parents of other kids like Karina, who share our fears and hopes, who completely understand.  I love having these people around us.  Our "guardian angels", who help guide us down the right path.  The path of optimism, and hope, who without their love and support, I might still be under the covers, crying myself to sleep. 

The Beta Unit comes through again!!

Our friends at South Brunswick School’s BETA UNIT have come through for us again in a major way!! They had their annual flower sale and again donated the proceeds to Karina. We feel so honored that these kids care about our Karina so much and continue to have this fundraiser.  The fundraiser has grown each year and it is so wonderful to hear how the kids get so enthusiastic about selling the roses and wanting to help our family. So much work and preparation goes into this event.  Our utter thanks to the South Brunswick School and especially Mrs. Antonia Edwards, who is responsible for making this fundraiser happen every year. The money will be added to help subsidize the cost of our mobility van, and we hope that we will be able to have the van by Christmas! :-)

We are so grateful. xoxo

Love,

The Colon family

Karina's Fundraiser Update

I don’t know just how my aunt does it, but she managed to yet again, pull off another amazing event.  Karina’s Tricky Tray wine tasting/ fundraiser was held on Friday, Oct. 21 at LaNeve’s in Haledon.  The turnout was sooo much more than we had expected.  We were expecting a possibility of 200 people in the beginning of the week, then by Wednesday it was more like 250-275, then by Friday’s event the final count was around 326!!!! We were also overwhelmed by the amount of donations that were provided by local businesses, family, friends, and friends of friends.  The Knights of Columbus, St. Michael’s parish Paterson chapter, sponsored the event.  We were hoping to raise money to help offset the cost of a mobility van for Karina and I am sure we reached our goal because that night, the state chapter of the Knights announced that they will be matching what we raised that night!!! Unbelievable!!  It was a magical night, although bittersweet also because the star of the event had just came home from the hospital earlier that day. We had really wanted her to be there but it was just not possible, so we had friends bring their video equip. to the tricky tray so that we could Skype in Karina from home.  Everyone was so happy to see her!  Our family has the BEST support system in the world.  We are fortunate to have so many caring people in our lives that truly love our girl and constantly pray and think about her and, who year after year, return for this special event.  Especially this year, with so many people whose homes were flooded and lost so much because of Hurricane Irene, still came out and supported us.  For that, I say thank you soo very much and God Bless you!

Knights of Columbus Hosts a Fundraiser for Karina

Karina Alessia Colón is a three and a half year old who lives in Bloomingdale, NJ with her mother Melissa, father Fernando, and older sister Arianna. She was born with Mitochondrial Disease, a life-threatening condition that weakens muscles, induces seizures and causes both respiratory issues and developmental delay.

Karina has outgrown her transportation car seat. It is no longer safe for her to travel in her family’s vehicle. The Knights of Columbus are assisting the Colón family by organizing a fundraiser for their daughter. All proceeds go toward the purchase of a mobility van—a vehicle Karina’s modified stroller can be wheeled into, making the need for a specialty car seat obsolete. Karina would be able to travel safely, without worry of possible injury.

We are hosting a Wine Tasting & Tricky Tray Fundraiser in Karina’s honor on Friday, October 21^st, 2011 at La Neve’s Restaurant & Catering. However, if you are unable to attend the event, but would still like to place a donation, please send contributions to:

Love Karina Fund
33 Hillside Drive
Bloomingdale, NJ 07403

CHECKS CAN BE MADE OUT TO:
Love Karina Fund
(Please do not send cash)

QUESTIONS? PLEASE CALL:
Lina Russo @ 973-595-9210

Here is a video of how the ramp system works with the van.

Karina's Therapy Room!

Karina's room is finally complete and it is just perfect for her. We want to thank EVERYONE again for helping us get the room finished. Your generous time and donations has given Karina a beautiful room where she can receive therapy, medical treatments and a good nights sleep!

We want to share the following pictures below with everyone to show you how your generosity helped transform a small dining room into a beautiful therapy room Karina can enjoy for years to come.

Therapy room is almost ready!!

We've had ongoing construction at our house for the last couple months.  Things have been a little hectic. But this will all be worth it in the long run!!! Demolition, construction, painting, insulation (we discovered that we had almost no insulation in this house!! Brrr!! Our family would like to thank some important people because without their efforts, this would never be possible:  Our heartfelt thanks to Cilento Construction for volunteering their services in the construction of Karina's therapy room and our "new" dining room, and also to my good friend El and her husband Fil for all of their organizing and hooking us up with the right people.  To my family and friends for the organizing of benefit dinners to raise money for supplies to make this all happen, to the owners who donated their restaurants--Pasquale at Piazza Margherita, and Sal La Rosa at La Neve's. Also to the Knights of Columbus (St. Michael's Chapter) and the Fidelians of America for their generous donations to our family because without your donations, this would never be possible.  Last but not least the BETA Unit of S.Brunswick school for their Halloween fundraiser now the 3rd year in a row!!

Our family cannot thank all of you enough for all your generosity, support, and caring, and always thinking of Karina. I want everyone to know that all of your time and donations help us immensely and we so appreciate everything that is done for us.

We anticipate completion by Christmas.  Here are a few of the pictures of Karina's therapy room from the beginning.

Front of house breezeway entrance (before)

old dining room

Down to the beams!

Fernando putting insulation in

Nice!

more pics to come!!

Happy 3rd Birthday!

Karina turned 3 years old on September 5th.  We had a party for her at a local park with our family, friends, and all her therapists from Early Intervention. I wanted to have her therapists there to kind of say good bye to her, since Karina has "aged out" of E.I. and will be attending a special school for her therapies.  It was bittersweet for them, and for me, because they are all very special to us.  Some of them have been with us since Karina was 6 months old, when all this was new and scary for me.  They have seen Karina grow from a very underweight, and constantly crying baby to an attentive, beautiful, non-fussy and very tall little girl.  We have come a long way together and I know I will keep in touch with them.   It was a beautiful, sunny day.  Karina was such a good girl.  The main event:  A birthday cake fit for a princess.  It was a Minnie Mouse cake, from Caladra's Bakery in Fairfield, NJ.  They did a BEAUTIFUL job!!!  Arianna helped to blow out her candles and even made a wish for her.  Karina's smile says it all.  We know she enjoyed her day.  Thank you, to everyone who made the day so special for her.  Every birthday is a milestone.  We take nothing for granted.

Benefit Dinner at Piazza Margherita Restaurant

Here are some photos from the wonderful benefit dinner hosted by Piazza Margherita Restuarant in Lyndhurst, New Jersey. The owner Pasqualle De Palma and his incredible staff went above and beyond anyone's expectations and gave us a night that we will never forget!

And of course we cannot forget to thank Karina's wonderful godparents for their unconditional love and support. Karina is truly blessed to have you in her life. Thank you thank you thank you for making this happen. The night was amazing.

The Beta Unit Comes Through Again!

We would like to give a heartfelt thanks once again to the Beta
Unit of South Brunswick school. The kids had their 2nd annual Halloween/Valentines Day fundraiser for Karina. The kids did a fantastic job selling flowers and they also gave Karina a very cute and cuddly teddy bear, and all the kids signed a giant card to give to Karina.

It is so wonderful knowing that these kids - whom have never met Karina - care about her soooo much. They are truly a very special group of kids. Thank you so much for all your efforts, thoughts, and prayers for our family. A special thanks to Mrs. Edwards for starting this now annual event!! We are forever grateful!

Love,
Fernando, Melissa, Arianna, & Karina

Butterfly Fly Away

June 26, 2009 was a very special night for the Colon Family. Arianna was in a vocal performance and sang a duet with family friend, Karly Mani. As a surprise to us, they sang a tribute to little Karina, their butterfly. It was a very emotional performance for everyone, especially for those of us who love Karina. There was not a dry eye in the theater! I was soooo proud of my daughter Arianna, for loving her sister so much, and for singing that beautiful song. Thank you, Music and Performance Studio, for dedicating the night's performance to our Karina.

Here is a link to the video:

http://www.youtube.com/watch?v=TexctGnsC38

Graduation Day!

On June 10, 2009, Karina's big sister Arianna graduated from Preschool. We were all very proud to see Arianna walk down the aisle in her cap and gown.

And in a wonderful gesture by the Bloomingdale Day Care Center & Preschool, parents and teachers took up a donation for Karina and had Arianna present it to us during the ceremony. We were moved, and in tears, we gladly accepted! Thank you friends, it is very much appreciated!

THANK YOU!

Last night was a great success! The incredible team at AJ's Deli & Brick Oven Pizza really came through in a BIG way. Everyone worked so hard and we were blown away by how much they gave for our daughter Karina. We cannot say thank you enough. You truly are special people. We feel blessed to have you guys come into our lives. Also, a big thank you once again to Toni and the kids from the Beta Unit at South Brunswick school for making the flower pens, which Arianna had so much fun selling. They were so beautiful and thanks for your continued support for Karina. Of course, a very special thank you to Zia Lina for working soooo hard all day along with the AJ's crew. You continue to amaze us and we are so grateful to have you in our lives. Karina loves you ZIA!!=)

The money that was raised is more than we had hoped for. Again, thank you, thank you, THANK YOU!!!

Great Pizza for a Great Cause

Next Monday, May 18th, AJ's Deli & Brick Oven Pizza of Haledon, New Jersey will be hosting a fundraiser for Love Karina. We can't thank them enough for doing this for our daughter. Here is the flyer:

Applebee's Thanks

We would like to thank everyone for dining (or ordering to go) at Applebee's on Thursday night. We really appreciate all the support. I'm sorry I probably didn't get a chance to see many people since we got there pretty late! We would especially like to thank Jodie for setting this up, and also to our secular franciscan brother who did a lot of the handing out of flyers to the local businesses. Thanks for all your help. These are just some of the local businesses who displayed our flyer:

Anselaine's Hair Salon, Butler
All American Shop, Butler
Bloomingdale Post Office
Bloomingdale Library
Foodworld, Bloomingdale
Glenwild Garden Center, Bloomingdale
Otto's Deli, Bloomingdale
Loreng's Transmissions, Bloomingdale
Bob's Barbershop, Bloomingdale
Van's Auto Shop, Butler
The Kinnelon Mudcats!

Butler United Medthodist Church, Butler
St. Anthony's of Padua Church, Butler
St. Anthony's Youth Group, Butler
St. Anthony Fraternity, Butler

Butler Firehouse Ziti Diner, Butler
Butler Senior Housing, Butler
Butler Senior Luncheon, Butler

Applebee's Fundraiser

There will be a fundraiser for Karina at Applebee's on Route 23 North in Butler, NJ on Thursday, April 23rd. Between 4pm and 9pm, 10% of your bill will go to the Love Karina fund. You need to bring the attached flyer with you when you go. This is only for the Applebee's in Butler only. Hoping for a good turnout! Thanks to our wonderful neighbor Jodie Comune for setting this up for us!

A Group I Never Wanted to Be In

One of my new mito-mom friends on facebook had this wonderful letter posted on her page, so I thought it was appropriate for me as well.

Many of you I have never even met face to face, but I've searched you out every day.I've looked for you on the Internet, on playgrounds and in grocery stores.
I've become an expert at identifying you.
You are well worn.You are stronger than you ever wanted to be.
Your words ring experience, experience you culled with your very heart and soul.You are compassionate beyond the expectations of this world.
You are my "sisters."
Yes, you and I, my friend, are sisters in a sorority.
A very elite sorority.We are special.
Just like any other sorority, we were chosen to be members.
Some of us were invited to join immediately, some not for months or even years.
Some of us even tried to refuse membership, but to no avail.
We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms and during ultrasounds.
We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films and heart surgeries.
All of us have one thing in common.
One day things were fine.
We were pregnant or we had just given birth or we were nursing our newborn or we were playing with our toddler.
Yes, one minute everything was fine.
Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.
Something wasn't quite right.
Then we found ourselves mothers of children with special needs.
We are united, we sisters, regardless of the diversity of our children's special needs.
Some of our children undergo chemotherapy.
Some need respirators and ventilators.
Some are unable to talk, some are unable to walk.
Some eat through feeding tubes.
Some live in a different world.
We do not discriminate against those mothers whose children's needs are not as "special" as our child's.
We have mutual respect and empathy for all the women who walk in our shoes.
We are knowledgeable.
We have educated ourselves with whatever materials we could find.
We know "the" specialists in the field.
We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments.
We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them.
Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.
We have taken on our insurance companies and school boards to get what our children need to survive and to flourish.
We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy.
We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects.
We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.
We have learned to deal with the rest of the world, even if that means walking away from it.
We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.
We have tolerated inane suggestions and home remedies from well-meaning strangers.
We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.
We have learned that many of our closest friends can't understand what it's like to be in our sorority and don't even want to try.
We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother."
We keep them by our bedside and read and reread them during our toughest hours.
We have coped with holidays.
We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween and we have found ways to help our deaf children form the words, "trick or treat."
We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas.
We have painted a canvas of lights and a blazing Yule log with our words for our blind children.
We have pureed turkey on Thanksgiving.
We have bought white chocolate bunnies for Easter.
And all the while, we have tried to create a festive atmosphere for the rest of our family.
We've gotten up every morning since our journey began wondering how we'd make it through another day and gone to bed every evening not sure how we did it.
We've mourned the fact that we never got to relax and sip red wine in Italy.
We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.
And we've mourned because we left for the airport without most of the things we needed for the trip.
But we, sisters, we keep the faith always.
We never stop believing.
Our love for our special children and our belief in all that they will achieve in life knows no bounds.
We dream of them scoring touchdowns and extra points and home runs.
We visualize them running sprints and marathons.
We dream of them planting vegetable seeds, riding horses and chopping down trees.
We hear their angelic voices singing Christmas carols.
We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall.
We are amazed at the grace of their pirouettes.
We never, never stop believing in all they will accomplish as they pass through this world.
But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

By Maureen K. Higgins

RSV and another hospital stay

Well, Karina was in the hospital again in early March. The second trip in 2 months. We tried to keep her out of the hospital, so as soon as she starting showing symptoms we stepped up her nebulizer treatments and suctioning and even started her on an antibiotic. But she starting wheezing so much, it was frightening. So, we drove to the hospital during the March snowstorm. Karina was admitted and came up positive for RSV virus! She never had that before so it was scary. RSV is very serious, for any baby, and knowing Karina's situation, it is even more so. Because she is so susceptible to getting RSV or any virus or infection over again, there was discussion about putting in a trach. We know that decisions will have to be made eventually, but spring is here, and hopefully she will not get sick again any time soon. So we will leave those decisions alone for right now. Karina's comfort and happiness is all we want.

Another Trip to the Hospital

Karina was hospitalized last month with brochialitis. This time it took a bit longer for her to fight it. But she won and is doing much better now. Going to the hospital is always scary for us! But as always, the doctors and nurses at Valley Hospital took such wonderful care of her. The nurses call her "their baby". She is very well known there. But there is no place like home, and we are very thankful to be home.

Karina's Cuddle Bug

We would like to thank Tyler's Gift Foundation for their generous donation of the Cuddle Bug Stroller. The Cuddle Bug is so important for Karina for her overall development. It will allow her to be in a more upright position, which will help with her congestion, and it will support her entire body. It has lots of different positions and features. We were so excited to receive it. Karina uses it every day and she looks so comfortable in it.

This is such a generous gift and it was desperately needed. We cannot thank you enough.

The Colon Family

Holiday photos

We spent the holidays with family and friends and rang in '09 at home with family. Being together is the most important thing of all, and sometimes we as a society forget that. It is easy to get wrapped up in all the hustle and bustle of shopping, wrapping, and getting things done, and just the hectic-ness of every day life. But in the grand scheme of life, your health, your family, and your faith is all that you need. Remember that next time someone cuts you off on the highway, or you have to wait on a long line.

We spent last Thanksgiving in the hospital with Karina, when her health problems first began. This Thanksgiving we were all together at uncle Johnny and aunt Lorraine's. Karina even had some sweet potatoes. She enjoyed all the noise and we even caught her smiling a few times! Her smile is always a joy to see.