Our happy little guy!
Our Nathan earned his wings on the morning of June 18, 2015. He was 4 and almost 3 months old. We have the most amazing guardian angel. "Death ends a life, not a relationship", and truer words were never spoken. Nathan has stayed with us- we can still feel him- and we know he'll be with us our whole lives. We will never stop fighting for a cure for Tay-Sachs in honor of our Nathan. Nathan is still changing the world and his legacy will continue. He will always be the best 4 years of our lives. Below are the words we spoke at Nathan's celebration of life- we are the proudest parents you will ever meet. Nathan continues to amaze us every day- we love you forever buddy- you're "The best little guy there ever did was."
"Nathan, as you know, was our entire world. From the moment he was born, our lives revolved around him. He was the only perfect thing we ever did. Nathan was joy and happiness all wrapped up in the most handsome little boy in the world. He was the best person I knew.
Nathan had hard times having Tay-Sachs, but he met, conquered, or accepted each obstacle with such grace- he was an old soul. He got it- he got life- he was smarter than I'll ever be and still he makes me so proud to be his mom.
Nathan only knew love- from the moment he was born until the moment he passed. He had a way of pulling in anyone he met and getting their heart wrapped around him. He had huge, wise eyes, and the most amazing spirit. He was powerful- he was pure. He was the only person who could make things ok no matter how bad the day was. All I had to do was hold him, and I felt such peace and calm. We still feel that now.
Aaron and I have cried so much these past few days and have been so devastated, but still, Nathan comes to us and helps us. His spirit has stayed near us and even now he sends us signs that he is here. He comes to us in our dreams- he fills us with peace and love when we don't know what else to do- all we have to do is ask him to be with us, and we feel him. Nathan is amazing.
We're happy for Nathan that he's free from Tay-Sachs. We know he's in heaven playing with all of his friends and laughing and running and hearing his great-grandpas read him stories. Stay with us Nathan the rest of our lives- don't stop coming, and meet us in our dreams. We will see you again- you are our greatest love and greatest accomplishment. The best four years of our lives. We love you forever. Even death can't take you from us- you are still ours."
It's been almost 3 months since our last update, and our little guy just turned THREE yesterday!!! Time has gone so quickly, and we continue to be grateful for every day with our happy little man. It's been a rough cold and flu season, but we know spring is right around the corner and we can't wait to get Nathan back outside taking walks and swimming in his own little hot tub- his favorite!!
We had our 2nd annual Beef and Beer at Duffer's Tavern on Feb. 23rd, and raised close to $10,000 thanks to the generous support of our amazing friends, family, co-workers, and tay-sachs family. Nathan was in the hospital with a respiratory infection during the fundraiser, and he was lucky to have his Uncle Mark and Aunt McGarrity stay with him so we could raise as much money as possible for the cure!!! We can't thank you both enough for staying overnight in the hospital with our Nathan so we could attend the event. Nathan LOVED every minute he spent with you both, and says he misses you and will see you soon!!! Maybe in CA this time- we could come to you- so he can dip his toes in the ocean. He and we cannot wait!
Our tay-sachs family Brian and Sherri Manning, John Tenberg, and Ken and Julie Bihn along with superstar Dakota Bihn of Cure Tay-Sachs attended our event as well and helped to make it a bigger success than we could have done alone. THANK YOU for all you've done- it's always great to see everyone and re-connect- you're such an essential part of our lives and we're thankful to know you all.
Nathan's been participating in an Irish Study for Einstein Medical Center, and did a mini-documentary with Einstein and geneticist Adele Schneider to help bring awareness for the need for tay-sachs screening in the Irish. We're so excited to be a part of such an important message, and so proud of our Nathan for helping to change the world- we want his life to be huge. If screening can be implemented for the Irish so no other Irish babies or babies of any ethnicity are born with tay-sachs, and once human trials begin for a cure, it will be a home-run. We wish everything for Nathan- for a cure- for screening and awareness for tay-sachs, for happiness and love to always surround him, and for him to outlive us both, so one day we can spoil his babies :) You are our entire world Nathan, we are so proud of your strength and wise litte soul- it's humbling to be your parents. God couldn't have blessed us more. Come on trials- Nathan is ready!!!!
It's been less than a month since our last update, and Nathan's been doing very well!! He got another botox injection into his salivary glands to keep him in good shape and going strong! He recently got over a bout with the stomach flu, but we have been blessed by his health overall this season- no complaints over here! Nathan had a wonderful Christmas, and got his very first big boy baseball bed built by hand by his daddy! Nathan certainly hit the jackpot on dad's- he sure does love his "da-da". There is nothing we won't do for him. Make A Wish also came in and did a huge Jimmy Buffet style sensory room for Nathan- complete with indoor swing!!! Our little "parrot-head" is in heaven with all that Jimmy Buffett surrouding him- it's "Nathan's Margaritaville". He swings and looks at the stars on his ceiling and coos along to Buffet on the radio. Happy little guy :)
Our holiday got off to such a touching start, my amazing co-workers at State Farm once again chose to donate to cure tay-sachs in Nathan's honor and our hearts are so full. We continue to be amazed by the generosity, support, and love that we've received this year. Our family and friends have been so essential to us during this journey, and we count our blessings every day. You make us so happy- that our Nathan is so very loved.
Nathan's next fundraiser has been planned- his second annual Beef and Beer at Duffer's Tavern on 2/23/13!! Check out his upcoming events tab for information and to see our flyer. We hope that this will be the last year our Nathan is not cured. Still waiting on trials- still praying, still fighing hard. We hope God blesses you all as much as he has blessed us this holiday season!
It's been about 3 months since our last update, and Nathan is hanging in there and doing great overall. He's had a sinus infection, ear infection, and cold, but continues to power through everything and kick all these darn respiratory issues that keep coming. Go Nathan!!! Alot has happened in 3 months, and we've been very busy traveling and spending time with our favorite little man. Nathan travelled to Boston to see Dr. Eichler again, and contines to do well overall. It was great to see all their caring staff again, and hear feedback from Dr. Eichler. Nathan also travelled to the annual Cure Tay-Sachs auction in Cleveland, OH this past October- hosted by Cure Tay-Sachs founder Ken Bihn and his amazing family, and of course the biggest star- Dakota! Nathan got to hang out with the Cleveland Browns, get some autographs, and spend time with some new girlfriends- Brielle, Ali, and Dakota! He was a happy little guy surrounded by so many pretty girls :) We had a chance to meet Brielle and Ali's amazing families for the first time, and see old friends we had met at last year's auction including the Hesslers- a family who has touched our hearts since last year's auction when they donated a framed photo they had bid on of all tay-sachs kids past and present to our family. The selflessness and goodness of people we've met along the way continues to leave us hopeful, grateful, and believing as much as we always have. Our Nathan can beat this, and trials are just around the corner- March 2013! We also had the honor of once again seeing and speaking with miracle reasearcher Miguel Sena-Esteves. Words can't describe the gratitude we feel for the caring hearts and brilliant minds of those who we believe are the answers to so many prayers being said for Nathan.
We are once again having a huge fundraising event for our Nathan, with all proceeds to go directly to Cure Tay-Sachs and give these kids the fighting chance they deserve. On Saturday, Feb 23rd, we are once again holding a Beef and Beer and Silent Auction at Duffer's Tavern in Glen Mills, PA from 5-8pm. The WHITEWALLS have generously agreed to play again this year and help fight for Nathan! Flyer and additional info to be posted soon. We're praying that it will be the biggest send-off party ever for our Nathan for trials, but everything depends on FDA approval and candidate selection. We can only continue to pray, hope, and believe, and raise as much money as possible to get these trials going and crush this horrible disease. Tay-Sachs can't have you Nathan- you are OURS! We're feeling very blessed this Christmas season, and so much hope for a March timeline for trials. Thank you so much to all who have prayed for, loved, and supported our Nathan, and believed just as much as we do- we could not have done any of this without you. There is good in this world, and we are certainly counting our blessings and feeling it this Christmas season.
It's been almost 4 months since our last update, and Nathan continues to hang in there and be the tough little guy he is. He had a bout of pnemonia about a month ago, that required a week long stay in Dupont Hospital, and is currently getting over a sinus infection. His resilience continues to amaze us- you can't keep him down long. He's got the biggest smile, and has started laughing a little again and smiling- music to our ears! Once in awhile he'll have a giggle or laughing seizure, but most of the time the laughs or smiles are on his own just because he's about the happiest little boy you'd ever meet. Not too much has changed with Nathan. We're switching him from klonopin to clobozam for his seizures, and that's been a difficult adjustment for him. The tapering off of one med and onto another med made him more sleepy that usual, but now that he's fully switched he's his old self again. Still saying mom, still saying up, even got a "buba" out of him once- for bubbles- when he swims in his hot tub- his favorite activity. :) He's never repeated the "buba", but he gets incredibly excited when you put him in the hot tub. Arms and legs waving and singing "wooooo" . As soon as we start to put his swim diaper on, he goes a little nuts. He's definitely a water baby. :)
Nathan's also been doing great with his exercises- he has an excellent OT, ST, PT, and teacher. He can still hold his head up for awhile when you place him in a sitting position. And he's loud as anything when he starts yelling MOOOM and AHHH GOOD. We have a ton of videos of him being his loud self that we'll post very soon. We're so proud of him. They just don't make them much tougher than our Nathan. We tell ourselves that when- not if- we finally get this cure for Nathan- he will change this world. He already has. Our hearts are so full with love for him. He's the best son. Strong, smart as anything, and funny. When we have to use our suction machine if he has extra saliva- like with the pnemonia- he'll clamp his mouth in mid-cough when he hears the maching going and just glare at us with his mouth sealed shut. Funny little smart little man.
Nathan travelled to Johnstown last month for a fundraiser put on by his amazing family and friends that generated another $1937 to cure tay-sachs, and the research we continue to pray will save him. Less than 6 months until the March 2013 timeline- we will get there. Thank you so much to everyone who planned, attended, worked, and donated for this fundraiser. It means the world to us and Nathan to have such support- and to know such amazing people who love our Nathan as much as we do.
A week or so after the fundraiser, Nathan travelled back up to Boston to meet again with Dr. Florian Eichler. Nathan was a great traveller, and we loved having the opportunity to meet with Dr. Eichler and his wonderful staff again. They are so dedicated, and on them and the consortium we hang our hopes. Come on trials!!!!
It's been a long 3 months since our last update but we've been very busy! Nathan's doing great still- fighting some colds since last time we updated and we recently discovered he has allergies. Zurtec has been wonderful in knocking his most recent month-long cold out of him that turned out to be allergies. He's been getting out alot and enjoying the warm weather. Nathan turned 2 on March 23rd and is almost 26 months old now- time sure does fly! He still says "up-voo" for up and "ahh- goood" for I'm good, and a couple of days ago, out of nowhere, he yelled MOOOMMMMMM as loud as could be- made my whole week! It's been a long time since I've heard that! We keep trying to get him to say it again- and we'll say "can you say mom-- mom?" and sometimes he'll say mom and other times he just looks at us like "I don't perform" :) Funny little guy. All the little things are so huge to us and we couldn't be more excited everytime he says something or babbles or picks his little arms up when he says "up- vooooo".
We recentely got some HUGE news. Nathan's results are finally back from Canada- the skin graft that Dr. Kolodny from NYU sent up to be analyzed last August. We were starting to think those results would never come. But it turns out that Nathan has residual enzyme activity that slots him in the juvenile category, so he is juvenile Hex A enzyme activity at an infantile age. We don't know what it all means yet and he's a bit of a mystery to the Dr.'s- in a good way- but we have nothing but hope. Your prayers and ours are working so please continue to pray for our Nathan. We're still waiting for and praying for the gene therapy that we hope will save our Nathan. We want to slow down time and speed it up at the same time. Speed it up to gene therapy and an answer from the FDA, but slow it down to continue holding onto every precious moment with Nathan- every up-voo, every MOM, and every ahhhh-goood. He's so tough and strong, and we thank you for all your prayers and support. You can BEAT this Nathan. If love could fix this you'd be cured 100 times over. We just continue to treasure each day with him and believe that miracles can happen. Hang in there buddy- we're almost there my tough little guy.
Our new fundraiser total for Duffers Fights Tay-Sachs for Nathan is $14,355 from related donations that poured in after the event- we could not be more excited!! We are so blessed to have such generous people in our lives who love our son and want to see him beat this terrible disease! We just found out from Cure Tay-Sachs founder Ken Bihn that Nathan generated the 2 millionth dollar for cure-taysachs since their inception in 2007- what an HONOR!! We hope to generate much more. Animal trials are now fully funded and our event's money and all future fundraising is going towards begining the actual human trial- WE CAN DO THIS!! The IND was sent to the FDA a few weeks ago, and there's a pre-IND meeting in early March with the FDA. Praying for a speedy, smooth approval so we can move forward to save our Nathan!
Nathan travelled to Boston this past week to see Dr. Florian Eichler for a follow-up for the Tay-Sachs Natural History Study. It was a wonderful visit, and left us feeling more and more hopeful for saving our Nathan! All of us are still holding our breath for Nathan's results from Canada to see what they show. It's been discussed recently that maybe there's not as big of a line between infantile and juvenile tay-sachs, and Nathan is certainly creating discussion on this topic- GO NATHAN!! Another couple weeks we hope until we get his test results..... fingers crossed and we continue to pray. Human trials are still set for Sept. or Oct. of this year and we are all hanging in there. Nathan's had a bit of a fever lately but doing good overall- yelling "up-voo!" any time we put him down and " ahhh gooood!!! " throughout the day. Just in case we forgot- he wants us to know he's good all the time. Smart little tough little guy who we love more than anything. God bless and will keep you updated!
What a WONDERFUL turnout we had at Nathan's Beef and Beer and Silent Auction at Duffers Tavern this past Saturday!! Special thanks to DUFFERS TAVERN for hosting the event, and THE WHITEWALLS for providing outstanding music! Thank you to everyone who came out and supported us and gave so generously of their time and money to help us move closer towards THE CURE!!! For all those who helped run the event, we couldn't have done it without you! We raised an incredible amount of money at the auction and from related donations for those who could not attend- $11,600!!!! We have amazing family and friends, and could not have done this without you!! Nathan's been doing great lately- we increased his seizure meds about a month ago from his cold that seemed to produce more seizures, and he's bounced back in a great way. He's still extremely aware, still yelling up-voo to be picked up, and had even started to do the melt-down cry again when you put him down or startle him- which is music to our ears- he is communicating!! And he's getting much more verbal about what he doesn't like- must take after his dad..... :) LOL Ok and his mom! Nathan's gotten a big boy stroller since I last wrote, and a big boy bath chair that supports him must better than his old ones. Human trials cannot come fast enough- 8 more months we hope if the timeline is met. We are continuing to raise money and fight for our Nathan and every other child living with this diagnosis. We are blessed to have such support and love surrounding us and our Nathan. Have a wonderful Valentines day- it's a good day in the Harney house and we are SO CLOSE to the cure. We hear that in the next few weeks we should FINALLY get Nathan's test results from Canada to see if he's making an abnormal protein- fingers and toes crossed....God bless!
What a fantastic Christmas we all had this year- we are so blessed. Christmas started a little early with our State Farm Family- all the teams on the floor made donations to Cure Tay-Sachs in Nathan's honor instead of exchanging gifts with each other, as well as our section managers. I spent the entire week before Christmas so speechless and so grateful for the kindness that's been shown to our family. This is the upside of Nathan's diagnosis- such amazing people who have shown such support and selflessness. We are very blessed and so touched by how good people can be. We travelled to Williamsburg, VA to my sister's house on Thursday night to have Christmas with Nathan's best friend- cousin Jack- and Liz and Sean and then Nathan's grandparents who came down Christmas Eve. Pictures coming soon! We took Nathan to see Christmastown at Busch Gardens with cousin Jack and it was so magical- the lights were amazing and Nathan had the best time looking around at all those lights- he was a wide-eyed little guy who was up WAY past his usual bedtime. :) We are so happy this year- and hugging Nathan much tighter than last Christmas. We are praying this is his last Christmas that he isn't cured with the gene therapy we are working so hard to fund. It is because of our amazing friends and family that we have been able to make such an impact on funding in Nathan's name- we are getting SO close! October and human trials can't come fast enough, but we are enjoying each day with our Nathan and he continues to be the happiest little guy. He "sang" alot at dinner over the Christmas holiday- he loved the chaos and the people and having his family in one place again. God bless you all and hope you had as wonderful of a Christmas as we did!!
It's been a long time since our last update, but Nathan has been keeping us very busy! On October 11th of this year, we travelled out to Ohio to the Cure Tay-Sachs annual silent auction and Nathan had the BEST time! We got to meet founder Ken Bihn and his wonderful family including, superstart Dakota- Ken's daughter, and so many other wonderful families and children who have travelled or are traveling our same path. What a corageous, hard working bunch of people they are, and we are so honored to be a part of this wonderful organization- www.curetay-sachs.org! We had the honor of meeting head researcher Miguel Sena-Estevez and his wife- check out Nathan's photos to see a picture! Nathan also got to meet some of the Cleveland Browns, and got his own mini-browns helmet signed! After Nathan and mom had gone to bed that night- he was up WAY past his bedtime- Aaron was presented with a framed picture of tickets from this event with pictures of all the Tay-Sachs kids, past and present. The picture was signed by some of the Cleveland Browns, Cure Tay-Sachs founder Ken Bihn, and miracle researcher Miguel Sena-Esteves! Rick and Lori Hessler had bid on this item, and wanted to present it to our family to keep. It gave us such a great feeling- they had never met us before- but the generosity and pureness of their gesture was so heartfelt- it meant the world to us. We have the picture hanging in our dining room, and we feel such hope every time we look at it. They'll never know exactly how much this gesture meant to us. They are the best kind of people, and we pray that God blesses their family as much as He has ours.
We're still waiting for the results of Nathan's skin graft from his visit to NYU in August to see if he is making an abnormal protein, and will be able to start Chaperone Therapy prior to human trials. The opinion seems to be that Nathan is not quite infantile Tay-Sachs, but not old enough for Juvenile Tay-Sachs, so possibly a cross between the two. We are praying the tests show what we hope, and that Nathan can start a new drug to keep him doing as great as he is doing right now.
Nathan's been fighing a viral infection for the past few weeks, but we thank God that it has never progressed to pnemonia. He is still his happy little self, just a little more tired than usual from all the coughing. He is SO strong, and SO amazing, and we are thankful every day that he was given to us to love.
We'll continue to keep you updated on his progress. Nathan will be 21 months old right before Christmas on the 23rd- time sure does fly. He is the greatest joy of our lives. Happy Holidays and love to all your families during this Christmas Season. Less than one year until human trials and we fight for Nathan every day- he can beat this!
So we have one more exciting piece of news to give you. Well, you see, Nathan likes to chew on his fingers sometimes, and sometimes he bites down too hard and it hurts. We have been working with him for the past couple of weeks to tell him "don't bite your fings" and pull his hand out of his mouth at the same time. About two days ago we started leaving out the physical part of removing his hand and simply telling him no. Sure enough, he has learned that when we say "don't bite your fings", he takes his fingers out of his mouth by himself! Of course we reward him with a lot of excitement and "good boys"! A sign that not only is the comprehension there, but the response is as well!
Nathan had a wonderful past week and weekend! We had some much needed vacation time- camping at Nockamixon State Park in Quakertown, PA with Aaron's brother, sister, and sister-in-law and we all had a blast. Nathan loves his Aunts and Uncle! Nathan got to hike, sit in his daddy's kayak, and sit around the campfire making mountain pies and smores. He's been doing so wonderfully- he's much more verbal now, and sings all the time. Car rides used to be a time for sleeping, but now he keeps Aaron and I laughing as he sings and yells Whoaaaaaaa the whole way. His smile is infectious. He's been sitting very well and still making progress according to his OT and PT and ST, and of course his parents! What an amazing little boy he is. He's been doing so well and we continue to pray that this lasts forever- his smile, his laugh, his progress, and of course his singing! Nathan might only be 18 months old, but he's the strongest person I've ever met.
We had our first fundraiser that we participated in with Brian and Sherry Manning and their amazing family and friends this past Sunday. We had a great time, and Nathan was loved and hugged all day by everyone. We've met such wonderful people along the way- from when he was first diagoned, to finding out there really was hope- that Nathan had a chance to beat this. Our hope and prayers still lie with the impressive research being done for gene therapy.
Someone once said "‘You never stand so tall as when you stoop to help a child". THANK YOU from our family to yours- for loving and supporting our Nathan. We've raised an incredible amount of money towards the cure with your help. He is so perfect and we are so blessed. I love you Nathan.
We travelled with Nathan to Boston last week to see Dr. Florian Eichler at Mass General Hospital, and take part in the Natural History Study for Tay-Sachs. Nathan did great- he was such a good traveller and took everything in stride. He had his first plane ride, and didn't cry at all- slept a little and looked out the window the rest of the time or up at mommy and daddy- he was a smiley little baby. We were glad to meet Dr. Eichler, and are looking forward to our next visit in 6 months. We are still praying for the gene therapy that we hope will save our Nathan, and working hard to raise money for the cure. Thank you to all of you who have prayed for us or made donations- it means the world to our family and we cannot thank you all enough. Nathan's therapists at his daycare say he's doing well, and he even had "belly time" this week and held his head up nicely! He's still doing good with his exercises and working hard and sitting longer on his own. STRONG baby he is- I learn from him every day- he never gives up and neither will we. His new trick is taking his pacifier out of his mouth with his thumb and forefinger- go nathan- and waving it around. Nathan's doing great and we will continue to post updates!
My wish for Nathan- Great Thoughts :)
My wish for you son is for a life full of love, peace, joy, happiness, confidence, success, balance, and contentment.
I wish you Love. Knowing that no matter what, I will always be on your side, even when it seems you are all alone.
I wish you Peace. Accept who you are and be proud of yourself. Do not expect perfection at all times, allow yourself to be human. Peace will not be far behind.
I wish you Joy. It can be found in the simplest things. The wind blowing through the trees, a child's smile, dog's playing. If you learn how to look, you will find it.
I wish you Happiness. Focus on what you enjoy. Listen to your heart. Make choices that will result in positives, not in negatives. Happiness will follow.
I wish you Confidence. Know that are a capable, responsible person. Do not be afraid to make mistakes, this is how you will learn. You will build confidence.
I wish you Success. Work hard, even when it seems it's not making a difference. I promise you it is. Success will follow.
I wish you Balance. Know what is important, and put them/it at the top of your list. Remember to respect yourself and others. Balance the personal and professional. This is a must.
I wish you Contentment. Know that where you are is exactly where you are supposed to be. Life changes so fast. There is nothing wrong with striving for better, but don't forget to enjoy the now. Look around be proud of your accomplishments.
I wish all of this and so much more for you. You are my heart, my life, my greatest accomplishment.
I love you.
In relation to Nathan's condition, he is able to still see and recognize Dada from about 30 feet away, with no signs yet of losing his sight. It takes him a minute to focus on you when he finds your face, however. He is very communicative, and coos back at you when you talk to him. He says "upvoo" for wanting to be picked up, and if you say "woah" to him, he will respond in the same manner! He definitely knows what I'm saying when I ask him if he wants "up", "bath", "da-da", "momma", and many others. Oh yeah, and when you ask him if he wants cotton candy, he starts wiggling like crazy! Nathan can still sit up in the "w" position for approx. 30 seconds at a time. Fourteen months was the last time we saw him roll over or support himself on his hands and knees, and he was learning to stand, leaning on a table at the same time, although of course he is not doing that any more either. Having to get a G-tube put a halt to his progress, but he is regaining some of his skills since being in the hospital for 3 weeks for the g-tube operation. Physical therapy says they see definite signs of improvement. He does hold his head up pretty well for about 25-30 seconds at a time. His torso is regaining strength as well, and I can now hold him on my hip again (leaning up against me) without him flopping around! He seems to have lost all interest in toys, but instead concentrates on people that are around him and interacting with him. Well thats all for now, more to come later.
Nathan went to NYU recently to meet with Dr. Edwin Kolodny who specializes in Tay Sachs patients, and is an integral part of the Gene Therapy Consortium that we are praying will save our little boy's life. Dr. Kolodny said Nathan was different than any other infantile Tay Sachs patient that he had seen based on his past and current development. Nathan is very unusual for this disease. He has an Infantile diagnosis, but somewhat juvenile symptoms. We are currently waiting on test results from this visit to see if Nathan would be a candidate for Chaperone Therapy until Gene Therapy trials begin for Tay Sachs kids. We're so hopeful and excited. We are going to Mass General Hospital to meet with Dr. Florian Eichler and take part in the Natural History Study for Tay Sachs. We are committed to saving our happy little boy- he is everything to us.