Cystic Fibrosis Fundraisers

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About Me

I am Lorraine, mum to two boys who both have the genetically inherited life-limiting condition Cystic Fibrosis.  Daniel is 22 years old and Joseph is 14 years old.
I am a dedicated and passionate Fundraiser for the Cystic Fibrosis Trust - bordering on obsessed!  Fundraising makes me feel useful dealng with a life-limiting condition which makes me feel useless - no amount of medication or treatments can stop the decline in health - Fundraising keeps my overactive mind busy and stops me dwelling on the future

For my 50th birthday I thought I'd give myself something else to focus on so I took on a Challenge to undertake 50 Fundraisers (from small to large - from Challenges to Events) and set a target of £50,000 to raise by my 50th Birthday Ball which took place at Belton House, Grantham on 20th May 2016.  This was a tough Challenge and one which I could never have dreamed of achieving without the support of my amazing family, the outstanding CF Community, local businesses and neighbours - target achieved ... and a bit more!

Onwards to 2018 Fundraisers now - currently selling the 2018 Fundraising Calendar and organising our Silver Wedding Anniversary Ball.

Speeches from my 50th Birthday Ball

Awards

Finalist in the 2016 Justgiving Awards for Outstanding Commitment to Charity
Finalist for ITV Central Pride of Britain Award 2017

About My Son's

Daniel is 22 years old and has just Graduated from Lincoln University with a 2nd Class Honours Degree in Business Studies.    He is a keen Photographer and a lover of fast cars.  He wants to be the next Lord Sugar and have his own business.  He likes walking, running and mountain climbing - he pushes himself as much as he can.

Joseph is 14 years old and seems to get everything thrown at him courtesy of Cystic Fibrosis Complications.  He has CF Related Diabetes, CF Related Liver Disease, Severe Bronchiectasis, Nasal Polyps, Reflux and his weight gain is poor so he had a  Gastrostomy in January 2015 - he is fed overnight with Nutrison Energy Feed.   He has IV antibiotics every 2 - 3 months for 2/3 weeks.  He had Surgery for a Fundoplication procedure in October 2016.  He can no longer be sick but is suffering from severe retching as a result of the procedure - he eats nothing orally now - he is fed Overnight and has Bolus Feeds during the day.  He loves gadgets - iPad, iPhone, Laptop - very interested in History, Space & Planets - knowledgeable on Politics and World News.

The Boys Medication/Treatments

Daniel (Dan)

Diagnosed with Cystic Fibrosis
in 2000 aged 4.

Novorapid Insulin with food
3 x Multiviamins a day
1 x Vitamin E a day
1 x Omeprazole a day
1 x Vitamin K a day
1 x Vitamin D3 a day
Azithromycin once a day
Minocycline twice a day
Moxifloxacin once a day
Creon 25000  25 - 30 tablets a day with food
Nebulised Tobramycin or Amikacin twice a day
Scandishakes twice a day
Portacath in chest flushed every 6 weeks.
IV antibiotics on average twice a year at moment

Lung Function averages 65 - 70 %
Joseph (Joe)

Diagnosed aged 4 days old after emergency blood test.

8 or 9 Units Insulatard (Insulin) a day
Novorapid Insulin with Bolus Feeds
Blood Sugar testing 2 - 3 times a day
1 Vitamin E a day
4 Vitamin AD a day
1 Lansaprazole twice a day
6 ml Domperidone 3 times a day
4.6 ml Alimemazine 3 times a day
2.5 ml BioGhia twice a day
Azithromycin Antibiotic Monday, Wednesday & Friday
Acapella or PEP Physio Twice a day
Nebulised DNase once a day
Inhaled Salbutamol before Physio twice a day
Inhaled Seritide after Physio twice a day
Nebulised Colomycin twice a day
Avamys Nasal Spray once a day
500mg Ursodeoxycholic acid once a day
Scandishakes 1 - 2 times a day
Creon 25000  20 - 25 tablets a day with meals
IV Antibiotics every 2 - 3 months for 2/3 weeks
Nutrison Energy 1000 ml  - 1200 mlLiquid Feed overnight
125 ml - 250 ml Compact Bolus Feed once a day
Portacath flushed every 6 weeks
Hearing Test once a year
Diabetes Clinic every 3 months
Diabetes Eye Screening Once a year.

Joseph had a Gastrostomy on 14th January 2015 to try and help him gain weight.

Joseph's Lung Function has dropped to an average of 43 - 48% for over 6 months.