Hip2Give: Cystic Fibrosis Foundation
I posted this Hip2Give topic yesterday on Hip2Save and was saddened and disappointed when I read all of the negative comments that ensued. The point of these Hip2Give posts is to provide inspiration, hope, kindness, empathy etc. I am re-posting this today (with all the comments removed from yesterday) with the hopes that you will only leave a comment if you have something positive or uplifting to share with other readers. Let’s all follow the saying “If you have nothing nice to say, then don’t say anything at all.” Thanks for your cooperation.
Over the last few months, I have received many emails from readers nominating wonderful charities and organizations to be highlighted on an upcoming Hip2Give post. Although it’s always difficult to decide what organization to highlight next; I was so moved by an email and video sent by reader, Sarah, that I knew I had to highlight Sarah’s story today…(you may want to grab a box of Kleenex before watching the video)
Our baby girl was born after 2 miscarriages and is the absolute joy of our lives. When she was 3 weeks old, we got the call that she had Cystic Fibrosis. This is a devastating, life shortening disease. Below is a video that I have made of her story.
[youtube=https://www.youtube.com/watch?v=NE15O35Qgx8&w=480&h=385]
**If you can’t see the video, then go here to watch it.
What Is Cystic Fibrosis?
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. Today, advances in research and medical treatments have enabled many people with the disease to live into their 30s, 40s and beyond.
Cystic Fibrosis Facts
* About 1,000 new cases of cystic fibrosis are diagnosed each year.
* More than 70% of patients are diagnosed by age two.
* More than 45% of the CF patient population is age 18 or older.
* The predicted median age of survival for a person with CF is more than 37 years.
The Cystic Fibrosis Foundation
Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. The mission of the Cystic Fibrosis Foundation, a nonprofit donor-supported organization, is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. It has received a four-star rating for sound fiscal management from Charity Navigator, the largest independent charity evaluator in the United States and is an accredited charity of the Better Business Bureau’s Wise Giving Alliance.
How Can You Help?
* Volunteer with the Foundation and help add more tomorrows to the lives of those living with cystic fibrosis.
* Donate to the Foundation and support efforts to enhance and extend the lives of cystic fibrosis patients and ultimately to find a cure.
* Participate in one or more of the 1,200 fundraising events across the country throughout the year
* Raise awareness about cystic fibrosis and encourage others to join the fight.
* Learn more about these and other opportunities at www.cff.org, or call (800) FIGHT CF.
(Thanks so much to Sarah, Virgina Blue, and the rest of the family for sharing their story of courage, determination and love with us…let’s all raise lots of awareness and money for CF!)
I am so grateful for your web site and your daily postings. You have managed to capture an audience with so many great things. Your so like the girl friend we all share our everyday lives with. Including those things which matter to us personally. I can only imagine how hurt you must have been reading nasty comments from those who are followers. I have always been a volunteer and have instilled in my now 21 year old college student the importance of helping others and getting involved. We just need to open our eyes, shut our mouths and look around. Someone can always use our support. My glass is always half full in life so I can always share part of myself with those who need it.
One of my good friends from HS died of CF. Thanks for sharing this, and spreading awareness!
I know that sweet babys momma. If only you could meet this tiny girl and see her zest for life , she would just melt your heart and you would want to fight for her too. Please take the time to learn more about CF if only for 10 min. of your day.Learn more about Ginger Blue at https://onedaywewill.net/VirginiaBlue/. you will be greatly moved by Sarah’s words of love and her fight to find a cure for this horrible, nasty ,mean illness .
Colin,
I think you are an amazing person with a heart as big as Texas.My niece died,19 years ago, just before her 9th birthday, from CF.We had never heard of CF until she was diagnosed with it.Thru research they have come a long way in treatment.Even though there is a lot of care and research that is still needed.A family needs support and hope.I am glad I didn’t see the comments from yesterday.However, I will say a prayer for those readers who felt they needed to be ugly and ignorant.To the ones..(you know who you are).. “May God bless you with knowledge and kindness, so that you can turn your uglyness and ignorance in to something positive to help someone and may you pass it on to the people who touch your lives,so that they can do positive and kind things as well.”..Amen…..I hope you don’t mind me posting my prayer here.Thank you again Colin…God Bless you!!!!!!!!!
Your prayer is beautiful and I’m sure it’s coming from your heart, but you are speaking about others without having known what they were talking about which is just as ignorant as your calling them the same. To be knowledgeable is to understand that we all have the right to freedom of speech and expression. We may not like what others say, but to take their right to say it away is just as wrong. Remember Patrick Henry? Thank God that most of the people who frequent this site are kind, compassionate people, but in tearing others down because they don’t think as you do is just as wrong in God’s eyes. “Judge not. lest ye be judged.” Now I’m guilty too!! 🙂 but I see so many people here get emotional because people don’t see things their way whether it be right or wrong. The world is made up of many kinds.
Hi Collin! I can’t believe people would leave rude comments about a precious baby girl with a life threatening illness?! What’s wrong with people now-a-days!? Anyways, Thanks for spreading awareness. Before this post, I heard of CF, but did not know what it did to the human body. Thanks you for I am now aware and this has touched my heart. Prayers to the family. God Bless
People didn’t leave rude comments about the precious baby with a life threatening illness.
I have to leave a second comment because I just showed this to my boyfriend. He recently got fired and we have been struggling financially. We have a 14 months old son. He has now become a stay at home dad and it is beginning to take a toll on him. I guess he didn’t realize how hard it is to stay home and play house all day, lol. Tonight he was extremely frustrated with our son..he is going through a stage where he throws a lot of crying tantrums for unknown reasons. I showed my boyfriend this video in hopes that he will be more thankful for the life we have and that we have a healthy son (even though he can be a brat sometimes haha). I think it’s great that you are doing Hip to Give! I will keep this family in my prayers. <3
Collin –
Thank you so much for sharing Ginger’s story! Sarah – I am praying for y’all! I can’t comprehend why anyone would say anything negative about a child who is fighting to live. My daughter has very severe asthma and life threatening food allergies. Just today, she almost went into anaphylactic shock because of food that was cross contaminated in the manufacturing and not labeled as such. We had loads of news stories last year and I was shocked and deeply saddened at some of the hateful comments people posted on the stories. There is so much ignorance out there. Until someone walks a day in the life, they truly don’t get it. Had my daughter not received life-saving meds this morning, she would likely not be here. You know the fight. Keep advocating and fighting for Ginger and never give up. Every person you educate is helping your daughter to live in a more accepting world. Bless you for sharing and speaking out! Ann
No one commented negativley about Virginia Blue. There were negative comments, but not about the family or their struggle with CF.
This mama and baby, are the two most amazing people in the world!!!!! And they ONLY derseve the best and ALL of the love in the world. Sarah and Ginger truelt make this world a better and brighter place!!!!
I did NOT check in yesterday and didn’t see any negative comments, but can’t imagine how or why they were made.
CF is a very scary reality for so many families and I would like to thank you for showing this moving video.
How could anyone not be moved to tears? CF is a cruel disease and I can’t imagine how hard it must be to watch your child suffer with it everyday.
I have recently been diagnosed with MS and have been feeling a little down (and self-centered concerning donating to research; MS fundraisers and charities have been on my mind because they concern ME… I had forgotten about the many other diseases/conditions that also need funding and ATTENTION!)
I will happily donate what I can to CF research. It may not be much, but as said on the video, every little bit helps…!
THANKS again for posting the video!!
-Sarah
God bless you, Sarah. My husband had MS for years, so I think I know what you must be going through. It is natural for you to be feeling as you are, but as difficult as it is, try to stay positive as that will help your body. They have come a long way with MS research over the years, so hopefully you and your doctors will find the things that will help you the best.
When you read the comments you realize how many people are affected by CF and how urent a cure is needed. I looked a Ginger’s web site. Sarah is amazing. I could not handle things like she is. Here July 27th post is amazing. Ginger, Sarah and Derek we are praying for you,
Wow, that video brought me to tears! I have a friend who has a little boy that was born with CF. The doctors told her that he wouldn’t live to 6 months. He is a miracle and has made it to 5 years now.
I have two healthy little boys…..thanks for the reminder of what I have to be thankful for!
Thank you for using your blog to bring awareness to organizations and people in need! I was shocked to learn there is NO funding for CF from the government. Our country needs to do better than that!
Praying for little Ginger! Beautiful little girl.
Such a positive approach of the family to a heartwrenching disease. Like all diseases that we have no control over such as CF or even JD type 1, this family is being positive and searching for a cure. If you live long enough you will find that someone will touch your life and make you realize how blessed you are to be healthy without need for help from others.
God bless and keep the faith.
My thoughs and prayers go out to any family with a “special ” child. I hope one day CF will only be a memory. Thanks Collin for bringing a wonderful cause to the spotlight and giving us all information to learn a bit more.
Collin,
Thank you for sharing what is important to you and what inspires you. Please keep up the generous, warm, and sweet spirit! (This YOUR website and no one else’s!)
We can’t all give to all charities, and our prayers may not be the same as the next person’s, but most of us do mean well. 🙂
Thanks again!
Jessica
I too did not see any of the negative comments made about this post previously and I don’t even know what anyone could say! Those people should be deeply, DEEPLY ashamed of themselves. I applaud your effort that you are not only trying to help people save money, thus making their lives easier, but you’re also encouraging others who are so very fortunate to pass that goodness along by supporting organizations such as the one you posted. I hope the people who left those negative comments feel embarrassed and remorseful they did so. And I will be keeping this family, and the so many others out there like them, in my prayers.
There were no negative comments about the baby, or her struggle.
I can’t understand why there would be anything negative to say about this post/video?
I have a 5 yr old daughter with CF…I appreciate the awareness this is bringing for our loved ones! Thanks Sarah for getting this info out there!
Much Love!
As a mother of 4 healthy children and 3 healthy grandchildren all I can say is God bless you all. I too would do anything to help my child have a full life. This is truly a beautiful child and this video touched my heart. It’s easy to ignore conditions like CF if you don’t know someone that suffers from the illness. Thanks for posting it.
Colin,
I also did not see yesterday’s post, but I want to thank you for posting this story,and helping to bring awareness of CF. My cousin, who has CF, is one of the most amazing women that I know. She has lived with CF for 33 years, and has endured a double loung transplant and a kidney transplant, not to mention countless hospital stays. She recently earned her doctorate degree, and truly is living proof that you can live a productive life with this disease. She is extremely motivated and postive, and now educates people on the importance of organ donation. I hope and pray that they find a cure for CF, and that Sarah is able to enjoy every moment that she has with her amazing daughter.
It is funny that someone who is anonymous keeps defending the rude remarks…regardless of whether they were about the baby or her family…this post would be NO PLACE to say ANYTHING negative! Thank you for all you do on this delightful site! You have saved my family a LOT of money, and it has been fun doing it! I carry the gene for CF, but my husband and I chose to not have him tested…thankfully, none of our 4 kids have it. I think it is GREAT you are using this popular forum to help someone, inspire someone, or just bring awareness! xoxo
No one is defending the rude remarks, we are defending their right to express them just as you have expressed yours. Once again, the ignorance of thinking your thoughts are the only ones that are important. When you take away the freedom of speech and expression, you are bringing about oppression.which is against everything our country is about. You think this is just a blog, but it is also social interaction which involves all kinds unless Collin chooses to allow only those who think the same.
The best way to overcome the negative, cruel people is to ignore them, not get all emotional and knock them down…..you are then doing exactly what you are criticizing them for. Why can’t you see that?
And, to make such a fit over names, one can put down any name which is what many do. It is the content that matters.
That was beautiful! I had tears! God Bless the gorgeous little girl and her family. Thank you God for giving them the strength to strive for a cure. I so hope they do.
Amazing!
Thankyou for posting this, i too have a daughter with CF she is now 3 and is doing so well that i feel like i have no idea what some other parents are going thru and i know this may not always be the case but if we keep working there may be a cure someday soon…praying for the family!
That was a moving video! I really loved the photos. Thankfully, I had a box of Kleenex that were on clearance at Target plus I had a store coupon and a manufacture coupon. A childhood friend recently passed away from CF and that has been weighing on my heart. Thank you for posting this.
Having a child with a lifelong disease, myself, I now all too well how passionate a family can get about raising money for the cure!! I truly believe that you were hand-picked to be her mama because God knew of your strength. Who better to donate than a hip2save mama, like me? I have certainly saved enough bucks, with the guidance of Colin, that I can donate something. God Bless!!
Virginia’s story was very touching, what a sweet little girl. Thank God for her life!!!
I did want to provide some information regarding the Cystic Fibrosis Foundation, for those who are INTERESTED. The fact is this organization is on the following list on a Right To Life Michigan Educational Fund’s website: “The following is a list of organizations that have expressed support for human embryonic stem cell research. Research with embryonic stem cells necessitates the destruction of human embryos.” Read here if you want more info: https://www.stemcellresearchcures.com/embryonic-stem-cell-supporters
I give this information not for any disrespectful comments, but for those who love the Lord, as I do, and/or for those whom the protection and value of unborn life is important, and who would want to know that an organization supports experimentation on EMBRYONIC (unborn babies) stem cell research – like Cystic Fibrosis Foundation does – before they give to it. You have the right to know this information.
I also wanted to provide an alternative organization, the Michael Fund, (https://www.michaelfund.org/index.php?pr=Home_Page) which supports pro-life genetic research (which doesn’t kill unborn babies); advocates to improve the treatment and care of those with chromosomal abnormalities; defends of the rights of handicap persons, born and unborn; and fights the eugenic abortion of affected pre-born children and the euthanasia murder of handicapped children.
I hope this information blesses some of you.
I love the lord with all my heart and I serve Him everyday in many ways. You obviously do not have a child with CF and have never felt true despiration and the hurt that comments like yours causes.
I think this is great to put this out here. My lil cousin has CF and he is now 13. He has dealt with so many struggles but he is amazing. You would never know by looking at him he has anything. He is a joy the this world and I pray they will find a cure in time for him to life the life he deserves. I continue to hope that the science we have out there, there will be more cure for causes. We all have to work together to help in anyway we can. Much love to the families out there.
How can someone leave a bad comment and sleep at night. I am saying a pray for those who don’t appreciate what they have in life. I will also pray for the CF family. That is hard and needs all the help they can get.
I don’t understand how anyone could view that sweet video of a beautiful baby and her family and find ANYTHING negative to say about it! As the mother of a baby with a rare metabolic disorder (PKU), I applaud you for bringing awareness to any of the struggles that people deal with daily. Thank you for helping me understand this disease better.
I had a niece die of cystic fibrosis at 16 years of age. I did not read any comments but if there were bad comments about this disease I am also saddened. This is a terrible illness that affects many children and adults. Jenna was a very ill child. We were lucky to have her in our lives for as long as we did. There are many mutations of this disease. Some children are much more ill than others. Jenna was one of the unlucky ones. Research and new drugs helped her to live as long as she did. With more research possibly there will be even better treatments for these children. Jenna is very much missed by her sisters.
Thanks for listening.
Wow…I cried all the way through!!! My hubbys little brother whom is now 28!!! has suffered from CF all his life. I’ve witnessed first hand some of the many struggles people with CF can endure. The advancements that the CFF has done to find a cure has come a VERY long way since my brother in law was diagnosed some 20 years ago and solely based on donations!!! Thanks to all who choose to help!
Thanks for sharing! My nephew just turned 24 on has been on the waiting list for a year now for a double lung transplant. Cystic Fibrosis has affected all of our lives. The CF Foundation has made great strides towards a cure. In the 24 years that we have been involved, they have isolated the gene that causes CF. We continue to pray for a cure soon. For all of us!
Thank you so much for posting this. I have a daughter, who is 17 now, with CF. She wasn’t diagnosed until she was 7,although she was a very, very sick baby and little girl, we just never could get the correct diagnosis. Most people are unaware of CF and what it can do to a person’s life so that is why this post means so much to me. It brings awareness to this devastating, life shortening disease. Now that my “little girl” is growing up I have returned to college to become an RN to be able to take care of other precious little ones just like her and only have a little over a year left to go. I just joined hip2save today, as one of my Nursing instructors just introduced me to it because she knows just how hard it can be to raise a family of 5 these days on a single income and going to college, so I really look forward to seeing just how much this can help us. Again, thank you for posting and raising awareness for CF with such an inspiring story!
my good friend lost her little girl to CF at 6 months… they didn’t know what was wrong until 3 months after she’d passed… i never really knew anything about it before meeting her and hearing her story… thank you for raising awareness…
I have two amazing children with CF, and we fight every day to give them a healthy FULL life. As their mom, it is so hard to see them struggle, but I love knowing that because of the CF foundation and so many who fight, we are closer than ever to finding a cure. Thank you all who give.
Thank you so much for bringing awareness to cystic fibrosis!! I have a four year old little boy with cystic fibrosis. There were times when I felt so alone in the fight against this disease, from reading the previous posts, I see I certainly am not. To all of you affected by CF, I am here with you hoping…wishing…praying…and fighting for a cure!!!
Here’s something that might give you hope. My cousin Tim was diagnosed with CF when he was a toddler. He had some struggles when he was young but now he is almost 30 years old & has been very healthy for the past 10 years. The life span of Cf patients is a lot more than it used to be thanks to medications & parent awareness
I am a 34 year old gal with CF-diagnosed at age 5. Thank you so much for highlighting this organization. CF often gets overlooked because of the lack of knowledge and press it gets due to being overshadowed by other diseases. I thank God every day for blessing me with the gift of life. Although my lung function is at 40%, I do very well in my every day life-have a full-time job, married for almost 6 years to a wonderful man. I don’t think of this as a death sentence, but a reminder that life is precious and everyone should enjoy every day to its fullest.
I’m so sad that this generated negative posts on this site. Both of my children have Cystic Fibrosis, and it’s a daily struggle of to keep them both healthy. Lots of meds, and therapy…much more than any nine and five year olds kids should have to deal with. There are days when my daugher will spend an hour or more doing nebulized treatments just so she can breathe easy, not to mention her therapy to clear her lungs. I’m very thankful that you chose the CFF for your charity. I know a cure is close, and I pray every day that my children will no longer have to deal with this horrible disease. God Bless!
I am new to this website and am very excited about it. I am determined to use coupons this year and save my family a heap of money. I want to be able to quit my job to pursue other things, so this is extremely important for me.
When I saw the Hip 2 Give ad for the Cystic Fibrosis Foundation, I was very happy. My son, who is now 23 yrs. old, has CF. We found out when he was 9 yrs. old. He has had so many ups and downs with it. But God has been there every step of the way.
He has recently been inspired to start a non-profit organization to raise money for the foundation and for families with rare diseases. The CF Foundation is constanly coming up with new treatments and medications to improve the lives of those who suffer with CF. I highly recommend donating money to them.
Unless you have a child or know someone who has Cystic Fibrosis, you can’t imagine what they go through and how hard it is to function on a day to day basis.
There are tons of meds, breathing treatments in the morning and the evening, and chest therapy to break up the mucus that settles in their lungs. It takes up a huge part of their day.
Anyway, thanks Collin, for being a supporter. And thanks to everyone else who supports it.
God bless,
Brenda
Brenda- I’m new to this site too and was very excited when I saw ad for the CF Foundation. My son is 15 years old and has CF too. Each CFer is affected by the disease in different ways. My son has the lung issues and the pancreatic issues but he also has CF related diabetes too and liver issues! He is currently on the liver transplant list awaiting a new liver. Too many people don’t know what CF is or what these kids have to go through on a daily basis just to stay relatively “healthy”.
No one can understand every disease that there is but if people would just understand that you don’t need to understand every disease to be supportive and sympathetic to the person with the disease and also to the family members who watch their love ones dealing with the disease on a daily basis. Every single person in the world can say “oh I know a kid with MS, or cancer, or leukemia, or diabetes, etc.”, and that foundation would be the one that is close to their hearts. The CF foundation is the one close to our hearts.
I’ve noticed over the last year that CF is starting to have more public awareness and as a mom that makes my heart swell, because the more people know of CF the closer to a cure there may be. My one and only wish is there’s a cure during my son’s life!
This is wonderful! i love every bit of it. Any help to the Cystic Fibrosis Fondation would be very great full. We are one of many familys also suffering with CF in our little daughter. No body other then CF familys can explain the feelings and pressures we deal with. A cure is a life time goal for all of us. The day we get the call, “we have a cure for little Audre” theres going to be a big party at our house and your all invited. Thanks all who donate! we sure do!!
Thank you for the repost and reminder to speak kind words. I’m a mother with a beautiful child who is effected by this disease. There are times your heart breaks and you just want to take a way their pain. Many don’t understand and when you need a shoulder to cry on the most, you have to be strong and positive for that child. Now after 7 years we are going to brave the storm and have another child. We won’t know the out come until they are here but our hearts and mind are ready to except and make the best of a beautiful life added to our home. God Bless the families that press forward and add a positive note when there are many dark hours wether you haven’t slept for a week, or you are on day 5 of a two week hospital stay. You are good people with great hearts.
Thank you
My husband and I have custody of our grandson who is now 9, he was diagnosed at 3 weeks with CF. He had to have his gallbladder removed and may be having problems with his liver, It is exhausting with all the treatments and medications he has to have and he is just a trooper. He knows the routine and just does it, when he gets sick he gets sick and we have to watch him and pray he doesn’t get hospitalized. The family and their support as well as the doctors and staff at children’s hospital are the most wonderful caring people you can have on your side. We encourage all to give to the Cystic Fibrosis foundation, Lets help come up with a cure so all is around to love one another for a long time.
I am a huge fanof this site and a fairly new couponer so I have been doing a lot of web searching and soaking up as much useful info to help as possible. I clicked on this link on accident and have no clue what you mean about the negative comments, or how someone could say anything negative at all about such a sensitive subject. I am a 31 year old woman who happens to have CF. Its a terrible disease but I have been so lucky and blessed with such a mild case. I thank you for highlighting this subject because most people know very little to nothing about CF and any help we can get in spreading the word and gaining support I appreciate and say thanks on behalf of myself and all people living with or personally affected by this disease!
Finally! I am so glad someone has chosen to highlight CF and how badly this disease needs a cure! My brother was diagnosed with CF at the age of 5. He underwent a bi-lateral lung transplant 7 years ago and is now 34 years old. As doctors have said, he is truly an amazing specimen. He still has struggles with CF, but is so blessed to be able to breath and living every day to the fullest now on his own. I believe we need to educate more on this disease because so many people have either not heard about it or do not know how life threatening it is to children.
I am new to this website in the last few days so i was not on here yesterday to see comments but i dont understand why anyone would write anything negative about any disease or situation or hardtimes a family would be going through…..that does not make any sense to me??? my brother has CF and i was also pleased to see the fight this family is making to find a cure and make everyday life easier for them and others, we also are “warriors” in this battle to find a cure!!! we have a benifit in our small town every year to raise money for CF and everyone in our little town comes together with much love to help out as much as possible! we do many more things also, and i just wanted to say how beautiful this video is and send out prayers to all!!! ((just breathe))
Thank you for raising awareness for Cystic Fibrosis. My youngest son, Clayton has CF. He is 11 years old and doing great. Loves life and acts just like a “Normal” boy…besides the fact that he takes 18 types of medication, does Chest therapy and breathing treatment each day. I am blessed to have him as a son. We have faith that someday a cure will be found.
My nephew’s wife has CF and is an amazing, positive survival story. When she was born her parents were told they would be lucky if she lived five years. Now she has a handsome 3year-old son and she is in her late 30’s. They deal with CF daily, but she and her family live life to the fullest, appreciating every day. There used to only be pediatric CF clinics. Now, thanks to improvements in treatment, many more people are living to adulthood. There is going to be a big Cf Fundraiser Bike ride in the SF Bay Area some time this year. I will find out more and post it.
Thank you SO much for raising awareness for CF! My 4 year old son Aiden has Cystic Fibrosis… and it’s definitely a challenging disease. Lots of hope on the horizon though! Every day is an adventure and an opportunity to renew my faith in God! 🙂
Thank you for bringing this issue to our attention.
I wanted to share an article, that may help, it is worth reading & considering HOW foods can be prepared, some simple things that can be done at home, that might help the body absorb nutrition from food better, https://articles.urbanhomemaker.com/index.php?article=647
Thank you for raising awareness for CF !! My daughter has CF & Diabetes and has been in and out of the hospital since she was 2 1/2. She is now 21 and about to be evaluated for a double lung transplant. I don’t think people realize what kids and their families have to go through coping with this disease. Once your child is diagnosed,your life is forever changed…Thanks again,Collin for making people aware of this disease..