February 2017

It’s hard to believe that this March will mark 10 years since the Shannon Daley Memorial Fund helped our family come back from financial ruins. Life has changed so much for us from 2007 and now we are in the position to begin to be able to give back to those who helped us in our time of need.

Thomas is 11 years old and in the fifth grade at Montgomery Lower Middle School, Skillman. He is excelling in his academic program, while receiving some support for math and reading. In his spare time, he has taken up golf! He loves playing with his dad, Jesse, and brothers – Jonathan (16) and Nicholas (10). Last year, we traveled to Palm Springs, CA, where he played in the most beautiful location and even took a golf camp in August.

Unfortunately, Thomas’ spina bifida diagnosis can be unpredictable. Last June, we found out that Thomas had tethered cord – a common complication in children and adults with spina bifida. He required surgery to remove the scar tissue that had attached to his spinal cord and was causing symptoms of numbness and tingling in his legs and feet. After a 5 (1/2) hour surgery, Thomas’ spinal cord was detethered at 90% – the remaining 10% was too risky to remove as the scar tissue was too enmeshed with the spinal cord. He had a rare complication after the surgery, but happily bounced back after about a week. His total recovery time was three weeks.

After we thought we had the surgeries behind us, we learned in November that Thomas’ left foot was again an issue. On Jan. 4, 2017, he had a surgery to realign his foot, transfer tendons, and shave down the bone that had become deformed as a result of his muscle imbalance. He is currently still recovering from this surgery and will have his cast removed a few weeks before the Shannon Daley basketball game in March. Only time will tell to see if the surgery was successful.

Despite his many challenges in life, Thomas is very healthy, and surprisingly, well-adjusted. He may have unexpected setbacks in the future, but he has an amazing support system behind him.

March 2016

Nicholas has come such a long way since we first joined the Shannon Daley family. We have so much gratitude for the Shannon Daley family and for all of the generous donors who made it possible for Nicholas to obtain the additional speech/language therapy, physical therapy and feeding services that he required. He is autistic, and has had many challenges with basic life functions and adapting socially.

Since 2011, Nicholas eats much better now and is not hesitant to try new foods. Nicholas is working on speaking in full sentences and making his articulation more clear. This continues to be a challenge for Nicholas, but the improvements that he has made have dramatically improved his relationship with his peers. Nicholas’s physical restrictions have decreased, and he actually has been able to participate sports such as soccer, basketball, and throwing the football with his big brother.

Nicholas is a very well-adjusted 8 year old who still struggles to clearly communicate with his friends and classmates, but thanks to all of the help he has received he is more willing to try to speak with his friends and is strengthening his skills to communicate and socialize. He still enjoys playing by himself sometimes with his iPad or video games, but he does interact a lot more with his brother John Michael and his friends than he used to. Nicholas will begin more in-home speech therapy in the Spring of this year, and he will be trying piano lessons and karate. Nicholas has a very big interest in music! He just completed running a Fun Run as part of a fundraiser at his school, and completed all 35 laps!

We feel so blessed to have had the support of the Shannon Daley family when Nicholas was at such a crucial age in his development, and it allowed us to get the extra services for him early on. We are so thankful to God to have Nicholas in our lives – he has taught us so much about living and provides us with so much love! He is a very cheerful little boy, and enjoys giving hugs now and receiving them. We are amazed by him every day, and the obstacles that he has overcome and strives to overcome. We do not yet know if he will be able to ever live by himself independently, but we are so fortunate to have had the support from the Shannon Daley Memorial Fund to provide him with the best therapies to allow him to reach his full potential to date! We have been truly blessed to be part of such a giving and supportive community!!!

February 2016

Chloe Grace is five and a half years old and continues to defy the odds she was given at birth. She was born in April 2010 with Spina Bifida, Hydrocephalus, Myelomeningocele, Arnold Chiari Type II Malformation, and Bi-Lateral clubbed feet. We were told after birth she would never walk, have urologic/bladder control, and possible cognitive delays.

She is enjoying Kindergarten and has made many friends and keeps a very busy schedule. She is smart, vibrant, loving and outgoing. Her determination to be independent and like her peers is inspiring. She is taking taekwondo twice per week, swim lessons once a week, is in Girl Scouts and continues with physical therapy twice per week at home and in school.

Chloe was potty trained this past summer and only wears a diaper at night. Her kidneys and bladder are “perfect” in her urologists words. We have started a bowel regimen to help her remain regular, and thankfully some simple changes and she is no longer having any issues.

She wears glasses and for now her ophthalmologist says surgery continues to stay off the table.

Her orthopedic is very excited for all her progress and strength. Chloe had a de-rotational osteotomy in December of 2014 and since being healed she has made tremendous progress in her strength, overall stability, and her ability to even walk without her crutches. It requires a lot of focus which is still a challenge for a five-year-old but she walks so fast it is more like running.

She recently had her annual check-up with her Neurosurgeon and Neuro Team at The Gait and Spasticity Clinic at Goreyb Children’s Hospital in Morristown and she received thumbs up from all her specialists. In truth she leaves them speechless and they believe she is a miracle too.

The future looks bright for Chloe Grace and we couldn’t be more grateful and excited to see all she accomplishes. She is our inspiration and greatest blessing. It is a privilege to journey with her in this life.

We are forever grateful to The Shannon Daley Memorial Fund for the assistance we received several years ago. It allowed us to climb out of medical debt and get the intensive therapy Chloe Grace needed to excel and defy the odds. They are an unmistakable part of Chloe’s success and they are family.

May 2014

Damien has come a long way since his last update.  The road however has not been an easy one.  In June of 2013 a simple camping trip turned into a nightmare for his father and me.  Damien was rushed to Hershey medical center lethargic and unresponsive. The emergency room staff were baffled. An hour later we found out his sugar was extremely low and that we needed to prepare for the worst.  After several hours and dozens of doctors Damien was stable and we were able to take him home with strict orders to make sure he ate every 1-2 hours round the clock.  Unfortunately the drug helping Damien to grow is also the same drug causing his sugar to be wacky it will drop some days and spike the next.   Damien was placed back on his tube feeds to make sure he is never going more than 3 hours without food to help with the sugar problem.  Around September of 2013 Damien got what we thought was the stomach virus. We took him to the emergency room for dehydration and ended up admitted for 6 days. What we thought was a virus turned out to be yet another complication. His stomach does not empty properly and his upper GI track does not move food properly if at all. Damien went from 23 pound to 21 pounds in 6 days.  We left the hospital with a new feeding routine that ended up failing. Finally the doctors decided to take Damien’s stomach out of the equation completely.  A Gj- Tube was placed 1 week later.  This new tube meant his feeds would go directly to his small intestine instead of his stomach.  THIS WAS THE BEST THING TO HAPPEN TO DAMIEN SINCE THE ILLIOSTOMY!!!  Damien is now getting all his nutrients at night over 12 hours so anything he eats during the day is bonus.  He is 25 almost 26 pounds now YAY! To make everything even better Damien is growing. He went from size 18m clothes to 3T in less than a month.  We finally got his sugar stable Damien was growing and all was well. Then we hit a brick wall. The level he needs to be on for his Growth Hormone to work is also causing possible optic nerve swelling. We’ve had to start all over again with both the sugar problems and his Growth Hormones as well as his eating. Throughout all of this Damien still reminds the laid back nothing is going to keep me down kid.  He could be stuck in a hospital bed full of IVs and casted on both legs and you will still see him trying to jump around and run up and down the halls. He lights up every room he enters and reminds all of us just how determined he is to be normal.  Our goal for this summer is to let Damien Be a kid. This is something he has yet to experience throughout the summer months.

January 2014

Matt is a 17 year old junior at Northview High School in Johns Creek, GA. He is an honor roll student, and an All-Academic and All-Region Honorable Mention football player on his varsity team where he is a starting defensive back.

He is in great health.

He hopes to attend the University of Georgia after he graduates next year.

Love to all,

The Fergusons

August 2012

My name is Sarah and I live in Elizabeth NJ with my mom, Maria and my brother David. My grandma, my aunt and my cousin live downstairs. I have a dog and a cat. My dog’s name is Kiwi. She’s a toy Yorkie who is almost 4 and my cat is a boy Ragdoll named Max who is almost 14!

I have Recessive Dystrophic EB, but I was never fully diagnosed because the genetic tests were inconclusive. Only throughout the years because of my symptoms, the doctors were able to diagnose me with the recessive form. We are called butterfly children. I know some kids don’t like the comparison but I don’t mind it. As a matter of fact I like it because butterflies are pretty.

I go to public school and I’m in eighth grade. I have a nurse that meets me at school and takes care of me for the rest of the day. Before I started this school in second grade, they prepared all the teachers and the students and everyone in the building for my arrival. The first day of school everyone knew me and said hi to me in the hallways. I was surprised and felt special. : ) Since my school is so big, it’s hard for me to walk the halls. I use a wheelchair that the nurse pushes. Every other Thursday three of my friends and I meet together in a classroom for lunch. We play games and talk.

If I could say anything to EB, it would be ‘Go take a hike!“ and then I’d kick it in the gut. I’d probably say another thing or two to it!

December 2012

Taliah had surgery on both feet a year ago. She is not back on her feet walking quite yet, she is still getting therapy. She’s a freshman in high school participating in drama club and art club and continues to make the honor roll. Taliah auditioned and got a roll in the school play The Wizard of Oz where she will be playing the wicked witch of the west. All is well and we continue to be blessed.

June 2011

We are so grateful for the help that we received from the Shannon Daley Memorial Fund. We can’t believe it’s been two years since we were recipients. In that two years, Stevie has made good progress. With the funds that we received, we took Stevie to China (www.stemcellschina.com) for a month of cord blood stem cell therapy. He received six injections of donated cord blood. Within several months of treatment, he gained increased trunk control , loss of spasticity, and better use of both his hands.

In March of this year, we brought him for an evaluation at the Institute for the Achievement of Human Potential in Philadelphia (www.iahp.org) The Institute works with brain-injured children and young adults. We are currently beginning an intense home treatment program for Stevie that the Institute designed for him. A major focus of the treatment involves “patterning” exercises that train the injured brain how to crawl, creep and eventually walk. Even in the short time that we’ve been doing the program and exercises, we have seen improvements in Stevie’s movements.

We are so grateful to God to be recipients of the Shannon Daley Memorial Fund and to be part of the Shannon Daley “family”. We thank you Shannon Daley Memorial Fund and donors from the bottom of our hearts!

February 2011

Jacob has made wonderful strides since we first became a part of the Shannon Daley family. Jacob has progressed from using a walker to using his Service dog Inca or his quad cane to walk. Jacob has undergone spinal surgery as well as several eye surgeries and tendon lengthening over the last couple years. Although the recovery has been long, the benefits from each of his surgeries have been remarkable. Jacob and his twin brother Matthew attend the Pre-K program at public school and look forward to Kindergarten in the fall!

June 2010

We cannot thank the Shannon Daley Memorial Fund and its generous donors enough for the help they gave us. Although we eventually lost our home, we were spared the disruption until after the bulk of the medical crisis was over. Losing a home and getting to keep George, however, was and is a bargain. George is in full remission from his neuroblastoma stage 4S hemmhoragic, and although he is minus a kidney, he is a dynamic, outgoing little boy who will proudly attend Good Shepherd Christian Academy (just ask him; he’ll tell you). Thomas, while still severely impaired by his autism, is making vast progress and is now becoming at last verbal and potty trained. The therapists he works with have us optimistic that over time he might lose most or all of the symptoms of his autism. Our family is committed to continually support the Shannon Daley Memorial Fund as we are able and we encourage those who cared enough to help us in our time of need to continue to support the new families. It makes a huge difference.

January 2010

Andrew has made tremendous strides since last March. He was accepted to West Virginia University in April and started college in August. His major is pre-psychology and he loves everything about campus life. In his first semester, Andrew made Dean’s list and says his shooting for President’s List (straight A’s).

It was not all smooth sailing, however. In November, he was hospitalize with H1N1 and pneumonia. With excellent care at the University hospital and being as physically fit as he was, Andrew bounced back quickly and was back in class in 5 days. 

We can never thank The Shannon Daley Memorial Fund for their support and helping Andrew start his wonderful journey into the future!

March 2016

We got the phone call from the doctors on January 25,2016 that Gianna’s Bone Marrow test came back clear and that she would be entering in her final phase of treatments. She has now started her maintenance program and goes for chemo once a month and takes her chemo drugs at home daily and will for the next 2 1/2 years. Gianna continues to amaze all of us with her strength and happiness while she fights this battle.  Thank you again Shannon Daley Memorial your caring and generosity has been a blessing beyond words.

March 2016

Sebastian is now 6 1/2 years old. He is happy, funny little guy that is usually always smiling. It’s hard to believe it has been three years since we became a part of the Shannon Daley Family. We are so thankful for this organization. With the help from Shannon Daley Memorial Fund we were able to get the handicap accessibility conversion to our van for Sebastian’s wheelchair. We are a very active family and this has proven to be life changing for us.

I can happily say now that Sebby is in a good place medically. February 2014 he had to have major orthopedic surgery on his hips. Because he never walked, his hip joints did not form properly and developed dysplasia. He was in a lot of pain and could not even sit or get his diaper changed without crying. After the 10 hour surgery and 5 days in the hospital, he came home in a full body cast. The cast was on for 3 grueling weeks. It was quite a long recovery and he missed almost 3 months of school. We both had to take family leave from our jobs to care for him during this time. So again, we have to thank Shannon Daley for allowing us to have the financial peace of mind during this difficult time. 

Sebby healed as expected and even a little ahead of schedule! He had the plates and screws removed Feb 2015 almost 6 months before the Doctor originally told us it would take to heal. This surgery was far less difficult and had a much better recovery time. This past New Year’s Eve, he had his first break through seizure in 4 years. It was very scary at the time and we celebrated the new year in the hospital but thankfully everything was fine. He is growing fast, getting tall and his medication needed to be adjusted to compensate. We have been extremely lucky that Sebastian has been in good health.

He goes to school at Lakeview School in Edison. He has been going there since he was three years old. He graduated from Pre-school in May and is now in the “big boy” class. He loves school and actually really enjoys his 45 minute commute to and from school. He has friends and absolutely adores his teachers, room staff, therapists and nurses. When he is not in school he loves playing with his sister, watching movies (Frozen and Hotel Transylvania are his favorites) and listening to music. He loves going outside and swinging in his swing on our playground and going in the pool. Sebastian has cortical blindness which means he cannot process what he sees all the time so sometimes being in loud areas unsets him. We are learning to deal with it and how to make him more comfortable. Most times if he has his music and headphones on he is good!

February 2015

In the beginning of February, we celebrated Natalie’s Sweet Sixteen.  We decided to mark the event with a family photo shoot.  The weather could not have been any better.  It was sunny and pleasantly warm with highs in the low 70s.  

We’re elated that the grand mal seizures have pretty much stopped but Natalie continues to depend on others for all her basic needs. It is tiring but he have a visiting certified nursing aide that helps and it doesn’t hurt that her younger sister is eager and able to help also. We know Natalie tries to communicate the best she can with her smile, laugh and eye contact but we simply want more and keep hoping for a cure.

We are excited that there is progress in research for finding a cure and treatment for Rett Syndrome. NNZ-2566, now named Trofinetide, recently cleared phase 2 clinical trials. It supposedly helps in building more connections in the brain cells. Not sure how much of an impact it will have but it is something. Thank you, Neuren Pharmaceuticals. We can’t wait to see it becomre available and see what improvements we’ll see in Natalie and others affected by Rett Syndrome.

We miss the Readington area and New Jersey but we have made adjustments and enjoy living in the Raleigh area of North Carolina. It is warmer and with the growth, it is becoming more and more like our home state.

Thank you for all the love and support you provide for our family.  We are truly blessed to be a part of Shannon Daley Memorial Fund.

February 2014

Since the fundraiser last year, Jonathan had a very a tough early spring in 2013.  Jonathan was hospitalized with pneumonia for three days.  This was his first and longest hospitalization yet, but we know it will unfortunately not be his last.  Since then, we have worked alongside a pulmonologist in finding ways to prevent pneumonia and other respiratory infections from occurring.  With Jonathan’s MECP2 Duplication he is very prone to respiratory infections and pneumonia.  With these preventative techniques that we have been taught, Jonathan has been fairly healthy since his pneumonia episode last spring.

In September of 2013, Jonathan had a 48 hour EEG which tested for seizure activity.  This is also a symptom of the disorder.  Luckily, Jonathan’s EEG did not show any signs of seizures, but he did show activity that shows he is at risk for seizures.  We pray that the seizures will never affect Jonathan like they have affected many other children with this disorder.

Jonathan has been very motivated in becoming more mobile.  Although he is still not walking at 2 ½ years old, he has just begun crawling, stands with assistance or against couches or tables, kneels, and finds ways to end up all over the room without walking.  He is still not very verbal for his age, as this is part of his disorder, but he continues to say “mama” and “dada” and babble other things that sound very close to new words.  He is beginning to take more part in feeding himself by fork, spoon, and by hand.  He is also helping to dress himself.  With this, he has become more independent and thrives off of knowing he can do something for himself.

Over the last year, he has continued to have four therapy sessions each week through Early Intervention.  He receives one session of speech, one session of occupational therapy, and two sessions of physical therapy each week.  All of this has helped tremendously in where he is at today.  Currently, we are preparing to find an appropriate preschool for Jonathan to attend next year once he turns 3.  When he turns 3 he will no longer be able to receive the therapy from Early Intervention, and, therefore, must attend a preschool which can give him the therapy and other things that he needs.

In closing, Jonathan has had a very good year.  He is always happy and loves to laugh and play.  Even when he is sick he is always a cheerful little boy.  We are so appreciative of what the fundraiser has done for our family.  Because of the fundraiser, we can have a safety net for medical expenses that can pop up at any time.  Also, since Jonathan will need equipment that will be very expensive in the future we are very happy that we will not be worried about being able to afford these things anymore.  Thank you very much to the Shannon Daley Memorial Fund from the Rojas family!

January 2014

Sydney turned 5 this past November. This was a very emotional birthday for mom since we were told she would not survive birth! Not only is Sydney surviving, she has done amazingly well. She is no longer taking any medications on a regular basis, the G-tube was removed last June (she eats constantly, weight gain is slow going though). She shows no sings of long term complications that are usually common with CDH like scoliosis, or chronic heart problems. She did stay a week at CHOP last February with pneumonia, and that still remains to be the only problem that we endure. When Sydney gets a cold, it always ends up in the right lung, causing fluid build up. The doctors are very aggressive with antibiotics and steroids, as well as breathing treatments, but unfortunately she stills seems to get pneumonia at least once a year. So she goes in “lock down” during flu and cold season. Visitor to our home are very limited, she does go to school, but if children are coughing or look sick, she is back home before the doors open. And we don’t go to many public places during this wonderful season! If I could find a bubble suite, she would be in it 24/7 lol.

Sydney is a very well adjusted 5 year old. She is very aware of her birth defect and has recently been asking a lot of questions about it and what each scar on her torso is from. She is a happy little girl who enjoys reading and putting puzzles together and when she is at the Doctor’s, loves playing with the equipment ( I think she is practicing for the future!). She is a sweet little girl with a very old soul.

As for the future? The Doctors keep a close eye on her, with follow up visits every four months at CHOP. A child of he severity would not have made it 7 years ago so they really don’t know what to expect. If her lungs continue to grow and function the way they are, they are confident that she will have a very long and healthy life. If her body gets too big for her lung to sustain her respiratory needs, then a lung transplant maybe needed, but as of right now they see no need for it. She will probably never be a long distance runner, but will lead a “normal” life. She is very in-tuned to her body and is very good about resting when it is needed. She is definately our walking miracle!! We thank God daily for the amazing blessing that he has given us, including bring the amazing members of the Shannon Daley Memorial Fund into our lives!

November 2011

Finn had his (basically) final surgery this past Monday November 14th.  It had a few minor complications resulting in an overnight stay but otherwise he is finished with the removal of his birthmark.  He may have to undergo some further surgeries to clean the site up but none of them will be as bad as the 3 he has already had.  He also received his leg braces this summer and made such a dramatic improvement with them that he was recently discharged from Physical Therapy.  He will continue to wear the braces about 20 hours a day and will still see various doctors regarding his walking but the major stuff is behind us.  I just wanted to say thank you for everything.  This past year has been a whirlwind for us and we would not have been able to accomplish a fraction of what we did if it wasn’t for the generosity of the Shannon Daley Memorial Fund.

June 2011

Our twin boys, Calahan and Tyler, were two of the lucky recipients of the 2010 Shannon Daley Fund. The Shannon Daley Fund has allowed us to purchase much needed equipment and communication devices for both boys. Calahan has a fancy, new seating chair which allows him the opportunity to do so many things we take for granted. He can now sit at the table and eat dinner with the rest of the family, be lowered to floor level so he can pet his beloved dog Simba, or just relax comfortably and play on the computer or watch TV. Calahan also has a new stander and bathing system. The iPad we purchased has allowed both boys to communicate in ways we never thought possible. Tyler loves to tell us what he would like to do and eat all through the use of the iPad. Calahan loves to read books and play games we have downloaded. We are so grateful for the generosity of the Shannon Daley Fund and allowing are boys these fantastic new devices. Thank you from the bottom of our hearts!

February 2011

Joey is continuing to amaze all of us with his recent growth. Thanks to the help from the Shannon Daley Fund we are able to get Joey the help he desperately needed with speech and feeding and although he is still having some struggles his achievements are wonderful.

Since last year Joey has started specialized preschool at Three Bridges School and is starting to actively participate in classroom activities. His communication skills have greatly improved and he is now using 3-4 word sentences and telling us what he wants or doesn’t want.

His health has improved enough for him to go to daycare daily and aside from his day of therapy he enjoys playing with children his own age all day. We are looking forward to celebrating his 4th birthday with his friends at The Little Gym in February, something we weren’t sure we would be able to do for a few more years.

This last year has been one of great strides for Joey as he continues his journey from being a micro-preemie. The help we have gotten from the Shannon Daley Fund has allowed us to concentrate on Joey’s recovery as opposed to juggling his necessities. We can’t wait to see everyone soon and show them how far he has come in such short of time.

April 2010

Erik is now a senior at Hunterdon Central High School. He will be graduating this June and has worked very hard to accomplish all of his goals. Erik has made the honor roll several times this year. The past two years Erik has been part of the Poly Tech program and has been in Pre-Vet. They have modified some of the programs for Erik’s success. Erik will not be certified as a vet technician when graduating but he has taken the state test for Boarding and Kenneling. Our goal is to put up a kennel on our farm and Erik will be able to run this as his own business. Our whole family is always there to help him in whatever he may need in the future. Erik is now employed part time at Giant in New Hope pa. and really enjoys his work and the people he works with. About six months ago Erik purchased a boxer pup that he named Kira. He has such a great love for animals so we know he will be in the right field of work for his future.

January 2009

Since Travis has been helped by the Shannon Daley Memorial Fund, he has made some wonderful progress. With the funds he received, Travis was able to utilize a program at the Institutes for the Achievement of Human Potential. Before attending that program Travis was 38 pounds overweight, wore eyeglasses, was not able to communicate, spent most of his day in a wheelchair, had very little use of his hands or arms, was on a lot of different medications for several ailments, and was pretty much in his own little world. At that time Travis was seventeen years old and was at a preschool level.

Things are much different now. After two and one half years of being on this program, Travis is now communicating with a facilitated communication board. He can spell words at a high school level. He has recently read his first adult novel, and without glasses! He learns math facts faster than I can prepare them. He loves to read about the subject of chemistry. He gives hugs with his arms now and loves to hold peoples hands (this is a dream come true for our family alone!). He is also learning how to combat crawl on a special board his father built for him. He has also lost 38 pounds since then and is so much healthier. Being able to finally communicate with Travis has helped us to see what a wonderful young man he is, and to also see what a prankster he could be. The first thing he spelled on his Intellikeys keyboard was, ìnow I have a voiceî.

We are grateful for the help Travis received from the Shannon Daley Memorial Fund. If we never had the pleasure of having them in our lives, I would not want to think of where Travis would be right now.

Needless to say, it has changed our lives dramatically.