1/5/15 Dear law makers and media, I am writing you this letter as you go back to work this week as new law makers. This letter is regarding a fed law that are group has been working on for some time now I would like to tell you about the hopeful law as well. David s law would allow all students with cystic fibrosis to be able to carry enzymes while in school and on all field trips as well we have also been asked to include student s that have other medical issues that have to take these as well this request came by a school official and we stated that would be ok as for them to be included in this hopeful law. The families would have to get a Dr s note and a parents note stating that the cf patient has shown he or she is able to self carry their own enzymes on there person and be able to carry with out issue and be allowed to carry only the amount needed for that day and if on a field trip remaining must stay in office in tell they leave for the field trip this is to insure no issues Currently some student s with cystic fibrosis are having to have parents come to the school many times during the day if the school does not have a school nurse on a daily basis. We know that there are parents that are having to meet some of these students in the parking lot due to the school will not allow them to give this to the students in the school with out being a school nurse this means that one parent has to be ready to go to the school on a moments notice for meals and snacks so the student may eat they are not able to eat with out these enzymes . Most students with these issues have been taking these on a daily basis for all of there lives and due this at home friends home other places with out issue but in school they can not due to the law not being passed as of yet . If a school does have a school nurse then this is what the student has to deal with on a daily basis The student must leave the last class before the lunch time 15 min early to be able to make it to the nurses office and then to the lunch room with out missing meal time If the school nurse is not in the office they must wait till she returns or in some cases the front desk may be able to give them . If there is a field trip then a parent must come on the trip with the student because there is no one else to help these student s with this issue. Going to the nurses office is not very good for patients with cystic fibrosis due to all of the people being in the office are sick with the flu or other medical issues as well and they could give the cf patients sick as well the students with CF when they catch a sickness they get it 2 times worse then other people Currently schools allow students to self carry other medication s that can cause death or a over dose for that matter however we will not allow them to carry these enzymes we feel this is so unfair its because many people do not understand about cystic fibrosis are 24 hr hotline takes many calls from school staff asking for help of them to understand cystic fibrosis as well and many times it s hard for them to understand about the medical issue cystic fibrosis so we talk with them and we speak with the families as well .. At this time David s law has supporters from all over the united states at are petition site petition2congress/2418 including each state in America as well this took lots of work from are supporters to make this happen however still we can not get the help from law makers or the media to make this happen I am sure not many hopeful laws can state the above statement so we are very happy that we have gotten this far. Some schools have decided to pass this law with out it being passed through out the United states because these schools could not wait any longer and we do have the support line for them as well as others were they can call with ?s that they may have. we also have volunteers from all over the united states that are hoping this law passes as well and this is great news as well so please lawmakers and media help us tell are story as we need to be heard as well currently we have 15,395 supporters many stories with in the comments of the supporters so please help us make this happen We are also looking for volunteers to keep working on this hopeful law as well to be added to are staff we have about 80 volunteers currently and would like to move that to 500 through out America from all of these families we think you from the bottom of are heart and we think the supporters as well please share this letter with everyone possible to get are story out and then hopeful a wonderful law will help out wonderful people fighting Cystic fibrosis each and every day we think you all for reading and sharing this as well we know that if we all join hand s we can make this happen Are 24 hr hotline is as follows 612-282-1211 and you may leave comments here as well if you would like to help you may email me 24 hr a day as well at fightcf@yahoo to school staff if you need help in any way regarding cystic fibrosis please use above information and ill help you the best that we are able we have also come to school class room s to speak about cystic fibrosis as well and we are willing to help in this matter as well again we say thanks to all as the new year starts we hope that we can finish the year with this completed as well as helping schools understand cf as well again thanks for your time David Cfkid Wagner
Posted on: Mon, 05 Jan 2015 17:58:41 +0000
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