Adam’s Page

Lourdes Trip Day 2  Friday – July 24

I think the morning came so quickly.  We had to be down for breakfast by 7:30 so we could attend mass at St. Maximilien Kolbe Chapel with the 206 group.  They chapel was very nice and located within walking distance from the hotel.  They had a very nice service and asked for intentions and Mom-Mom asked for an intention for Adam.  We had to get back to the hotel very quickly so we could take the bus to the 1^st half of the walking tour of Saint Bernadette.  When Mary appeared to Bernadette she asked for two things build a chapel and bring a procession to her.  We went to the Parrish Church where Bernadette told the priest about the sightings and they at first did not believe her until the vision on March 25^th when Mary declared she was “The Immaculate Conception” .  The words were spoken to Bernadette who could not understand the meaning of the words used, so now they started to believe.  The Church was so beautiful all the stained glass windows and was surrounded by sanctuaries from Lourdes.  From there we went to the home home of Bernadette and 5 others when things were not very good for them.  They lived in a single jail cell room for 18 months.  They had 4 beds for 6 people and the youngest boys slept on the dirt floor.  One of the boys was even found in the back of the church eating the melted wax from the candles.  Bernadette did not want to leave but her parents sent her away to work and learn the bible so she could receive 1^st Holy Communion.  This was also one less mouth to feed.  She did as she was told and returned at the age of 13 and told her parent she would rather be poor and live with the family in prayer then to work, be fed well and be away from the family.

Soon after this the visions started at the Grotto. 

Form the prison we then  visited where Bernadette was born.  The Boly mill was the name of the name of the building.  We saw the map of Bernadettes footsteps and family history of the family.  We left the home quickly because it was 12 noon and the nuns needed to get to lunch.

We went from there to the path that Bernadette took to the Grotto.  At the Grotto we could walk through and touch the walls of the cave and see where the spring was sprung for the holy water from which we washed and drank from the side of the lower Basilica.  What a tremendous feeling walking through where Mary had appeared!  We spent a bunch of time just relishing in and praying for what we needed, the healing hand of Mary and one of the faithful Miracles as we need.  We then went back to the water and washed and drank and placed Adam’s head under the water.

Next was lunch back at the hotel and Adam and Katie loved the chicken and fries (Belgian).   Javier surprised Adam with a very nice gift after lunch.  A sheep doll and we know how much Adam loves his webkinz!

After lunch we watched a video of Lourdes that lasted about 35 minutes and was wonderful to hear the history over and over.  From there the group decided to go directly to the Blessing of the sick at the Underground Basilica.  Wow, what a huge Basilica.  I think they said it could hold 25,000 people.  Lourdes is a place where the sick are always first.  The have 20,000 volunteers annually to help and if you were her you would know why.  They care and pray for all the sick and in need of help.  Adam was in the front with Mom-Mom as the blessed eucharist was blessed over them. It was an amazing procession and we got some really great photos of Adam on the Alter.

We went form there back to the Grotto to add the many petitions that were brought with the group.  I was able to put mine in first and walk through the Grotto again.  From there we went back to the hotel for dinner at 7.  Katie loved the soup!  She had a few helpings and it was very good for her.  Adam liked the pork so much he asked for more and of course he asked Javier for ice cream for desert and Katie agreed.

After dinner we went and filled our large container of Lourdes water and watched the candlelight procession from the Basilica.  We are tired now and going to bed around 10:30.  Good night.

Our Trip to Lourdes 2009

Thursday – July 23

We had a very busy 1st day getting to Lourdes but, it was worth the wait.  Our trip is run through 206 Tours with Lorraine and her mother.  They have everything so well planned out and such great helpers work with them.  I believe we had 52 people on the flight!  The long flight from Newark to Paris was a very nice flight but I just can’t seem to sit for 2 hours let alone 6.5 hours.  Adam slept for maybe 2 hours and I can not sleep on planes.  Katie did a great job helping Adam with the television games during the flight.  We landed in Paris France and it was morning their!  So much for sleeping.  We left Paris and headed for Pau after about 3 hours layover.  My mother asked if we saw the Eiffel Tower on our flight out.  This flight was much shorter and much easier on everyone.  

There were 2 buses there waiting for us to take us the hotel.  What a magnificent sight pulling into Lourdes and to our beautiful Grand Hotel Moderne.  I do not know how these bus drivers could ride down such skinny streets.   I think we went through a couple of places that we only had a few inches to squeeze through.  When we all met in the hotel lobby we met Javier our guide and he gave us instructions and our key cards for our rooms.   We had a few minutes to unpack and settle in before dinner at 6:00 at the hotel.  We had soup then beef tips and potatoes (of course everyone ate the potatoes except me!) and a wonderful desert.  During this time Javier asked Adam if he liked the food and told him if there is anything he did not like to let him know and he will take care of it.  Adam was not to thrilled with the desert and Javier made sure he got a huge helping of ice cream!

Javier could tell why we are here and he told us about his family.  You could just see him take to Adam and what we are going through.  Javier could see that it had been a long, long day and suggested that we take a quick tour of the holy land. So he took a few of us to down from the hotel to some of the most beautiful structures I have ever seen.  We first stopped at the Statue of the Crowned Virgin Mary and then the Basilicas.  He explained all about the bottom structure was built just to support the Upper Basilica.  Mary in one of her 18 sightings at the Grotto had asked for a church to be built there. We then moved on to the Grotto and to see the beautiful Statue of Mary and all the candles burning was incredible.  We eventually went down to the baths of holy water.  Javier asked Adam when he needed a bath and Adam said I just had one Sunday.  So Sunday may be the day for Adam.  We then went back past the Grotto and washed and drank some of the Holy Water as instructed by Javier.  We could not have had a better person to show us around.  He truly cares about his job and loves the reason we are here.

We have a busy day planned tomorrow and Adam fell asleep in about 3 minutes.  Now it is my turn…. 

Sorry it has been so long since the updates.  We have had so many things going on and are excited to share them with you.  Our Run/Walk for a Cure was a huge success as usual with the great help of the Race for Adam Committee.  We raised over $20,000 more for research for this devastating disease.  Thank you Matt, Kelly and the rest of the best committee anywhere.  Our Field Goal Kicking contest could have used help from mother nature it was very cold.  We had a great time kicking field goals to find a cure!! We even built the holders for the footballs.  A few Eagles cheerleaders even made and appearance!  They did a great job and even tried kicking some field goals. The 3 Starters restaurants held a fundraiser for the Race For Adam Foundation.  We had a great time enjoying the great food and dining experience at all 3 places.  Thank you so much!Adam, Katie and I are leaving for Lourdes on July 22.  Please keep us in your thought and prayers!  We are so glad to be part of this wonderful pilgrimage to such a Holy Place.  Hopefully we will get the miracle we are all praying for.  I am going to keep you updated on this trip through the blog.  We have so many neat things planned and hope to share them with you.  We are also so excited about the Poker Ride and Family Picnic at Shoenersville Fire Co. on August 15th.  I know Casey and his dedicated committee have been out talking about this great event.  Adam was up dancing on stage last year and can not wait to tell the biker to ” Start your Engines”.  What a great time last year, over 750 bikes and great music!  I can not wait to see all of the neat things this year.  They are even raffling off a 2010 FatBoy!!!  It is such a great motorcycle ( I hope I win!).  Casey, Kevin and the crew have opened the Bada Bingg on 9th street in Allentown.  With the great food I am sure they will be a huge success.  We wish them the best and can not wait to have more pictures up on the wall for Adam after this years events!  The next event is the Craig Geiger Memorial Golf tournament at Willowbrook Golf Course in Catasauqua on September 12th, sponsored by the Keystone Pub.  The Committee is working so hard at making this golf event a spectacular time.  Adam and I are looking to help in any way we can.  Can You?  We will update the PSEA Golf for a Cure when we can. We are also very proud to be joining a group of parents that are doing whatever we can to save our child.  We returned from a medical research conference in May and were very impressed with the research that is being done!  I have learned and will continue to learn so much about Niemann-Pick Type C Disease.  We are in a race against time and researchers need time to come up with a cure.  We do not have the ten or so years to give researchers to find a cure.  Time is not on our side!  We need help now!Adams has touched many people from the baseball players from Bethlehem Catholic and Central Catholic.  We had a great time at the game!  We have met some wonderful people.  A player actually hit his first home run in his life the following game and he asked for the ball and signed it to his hero Adam!  What an amazing young man.  Speaking of Amazing are star soccer player Jason cam home from Brazil with a jesrey for Adam.  Adam wears the jersey with pride, not for the name on the back, but for the nicest person he could ever befriend.  Thank you Jason.We will be in touch from Lourdes! 

Well alot has happened since the last update!! We had a great time at the Walk/Run for a Cure in May and what a great surprise with the very generous donation of $50,000 from Bear Sterns. We can not thank the Spina Family enough for all they do for us!! In July we had our Poker Ride and Family Picnic that was so much fun. Casey and his committee worked so hard to get about 700 motorcycles to join in our ride. We had a great time listening to all the bands play until late in the evening. October is a busy time for us. Bob C. ( PSEA ) held the Golf for a Cure and Adam had a blast. Adam sunk some of our putts as we needed them!! We had a few special people at the golf tournament. Adam recieved a brand new bike from his buddy Whiplash and we had Glen S. from the Ara Parseghian Medical Research Foundation. Glen came all the way from Tucsan to spend the day with us. It was a please to finally meet the man that I have talked to for hours by phone for the last 3 years.
We did make our annual trip to the National Institutes of Health in Bethesda Maryland. Adam did a great job through all the tests. He impressed so many people with his courage and bravery. All said he is the best patient they have ever had! Most of the tests came back normal. Adam’s hearing aides need to be adjusted a little because of a slight decline in his hearing. It was a long visit and we are happy that we only have to return next year.
We are so happy with the sports teams in Philadelphia. The Phillies invited us down for batting practice the day they clinched the National League East!! We actually met Shane Victorino and Jimmy Rollins. They were both very generous in taking the time to talk to us. Shane is holding a golf tournament for Alzheimer’s research. He was blown away when I told him Adam has Chiildhood Alzheimer’s. Jimmy gave Adam his batting gloves and Shane gave Adam a signed baseball bat with “Flyin Hawaiian”. These items mean so much to Adam and we cheered them on proudly until they finally won the World Series!!!! GO PHILLIES.
Last Monday Dave S. invited Adam and I down for the taping of the Donovan McNabb Show! What a neet surprise at the NovaCare Complex to run into Coach Reid. He told Adam to stay strong! After a delicious lunch we went to the Link to film the show. Sure enough Dovovan was such a great person to meet. He Autographed a picture of Adam and himself and Adam’s Jersey. WOW! What a wonderful time and special memories for Adam. GO EAGLES!!!

We are currently running a “Chill Out” fundraiser where students get to choose a teacher from Salisbury Middle who will stay overnight in the courtyard at school! The students are placing their spare change in a jar with the teachers picture who they would like to ‘Chill Out”. On November 20th the lucky teacher will move to the courtyard and get ready for hopefully a nice evening. Currently I am in fourth place! Good luck to whomever is chosen to “Chill Out”.
Adam is having a great beginning to school with all his friends and teachers at Farmersville Elementary School

Adam is keeping us very busy lately with OT, PT and now Baseball. Coach Jim is doing a great job working with all the players and the team is improving with each game we play. Adam is getting more comfortable at the plate and he fouled off a pitch in his last at bat!
We had a fantastic weekend in Northampton at the “spring thaw”. We walked around, talked to some of the vendors and dhowed off Adam’s vest. There were so many neat motorcycles to look at! That same day we were invited up to Lappowinzo to try and catch a fish. We have been fishing a few times, but with no luck. Not this time Adam was able to real in a whopping 18 1/2″ beautiful Rainbow trout! Thank you to all the wonderful people that we met there. The trout is at the taxedermist so we will never forget the great smile Adam had as he reeled it in.
If you get a chance to stop in at the Promenade shops this Saturday the 10th we are going to be at the Rave from 10:30am till 8 or 9pm. Our new friend Nick is helping us promote the walk/run, poker ride and car show with the opening of Speed Racer. We will have tables out with all the information and if you register for an event you will get a free popcorn voucher!!!
Back to Baseball– Adam has been selected to throw out the first pitch at the Philadelphia Phillies game on May 17th!! Hopefully he will throw a strike. The wonderful people at Jefferson University sold more than 500 tickets to give Adam this opportunity. It is going to be Occupational Therapy awareness night and hopefully we can raise awareness about Adam!! Adam has been practicing his form and is so excited about this event. Thank you so much Allison, Shannon and Greg you are awesome.

Adam worked very hard at Occupational Therapy and Physical Therapy this week. Sarah and Ann are both focusing on his balance and co-ordination. We have another busy day today. After school we have CCD and Adam is going to try to take the exam by himself! Adam was tested at school and his reading level has increased to level 18. We are very proud of this accomplishment!
We have some great news to share. Our very good friends, Disciples of Joy, will be awarded the “Clown Alley of the Year” by the World Clown Association!! Congratulations to all the wonderful clowns that are always at our events and bring great smiles to all. This is a very prestigious award and well deserved by the Disciples of Joy!
We will be at Lehigh University for a Lacrosse match this Friday. Greg Furst and the Lehigh Team have invited Adam to be an Honorary Captain on April 11th at the game against Bucknell. Go Mountain Hawks!! We really appreciate all Greg and the Disciples of Joy have done to help us raise awareness about the horrors of Niemann-Pick Type C.

This was a very busy week for Adam. Adam had his 9th birthday on Tuesday. When Adam woke up he wondered around the room and read each of the 7 posters we hung for his birthday. After a long day at school at Farmersville Elementary, Adam sat and started his homework. Fortunately Adam did not have a whole lot of homework. At 3:50 Adam and his mother went to his weekly Occupational Therapy appointment with Ann at St. Luke’s North. Ann had a lot of neet things for Adam to do to help with his coordination. When he finallly returned home for the day around 5:15 pm we ordered his favorite food Pepperoni Pizza. After eating pizza we celebrated his birthday with his favorite cake ( Bownies ). Adam had the biggest smile as we all sang happy birthday to our dear Adam.
Adam could not wait to open his birthday presents and he was so excited when his father brought in the biggest gift. It was a pull behind bicycle! He and his father are going to try it out as soon as the weather co-operates.
Adam also had his first baseball practice on Thursday! He is playing for Augello Chiropractic in the minor league for FBTAA. He has the same coach as last year! Coach Jim is a fireman in Easton and has asked for each Professional Firefighters local donate to the Race for Adam Foundation. He called it ” A buck a Man ” campaign. He is hoping to raise more then the $700 they raised last year! Next practice is Saturday.
Adam is looking forward to all the upcoming fundraisers which include April 11th at Lehigh University Lacrosse, Texas Hold’em tournament on May 24th, The Walk/Run for a Cure on June 14th ( If you can not make it that day you can still sponsor Adam ), The Poker Ride and Family Picnic August 16th, The Golf Tournament Tentatively October 4th and The Car Show Tentatively October 12th.

A special thank you to all who make these events such a success.

We end each day with a prayer and ask the good Lord to place his healing hands on Adam and all those affected by Niemann-Pick Type C Disease ( Childhood Alzheimer’s ).

Please keep us in your thoughts and Prayers.