Our Pal - Brooke H
- Born: 18/01/2008
- Illness: Cystic Fibrosis
- Status: Current
- Home Page:
C/O 14 John Carr Avenue
NB: this is a forwarding address for the Pal, we do NOT disclose home addresses
- Parents/Guardians - Kelly-Marie
- Interests - Brooke loves Moshi Monsters and shopkins, she enjoys all sports and competes in dance competitions regularly. She loves family time and play fights often with her siblings. She loves role play and enjoys writing.
- Favourite Colour - Pink and Purple
- Able to read? - Yes
- Able to use hands? - Yes
- Visually/hearing impaired? - No
- Suffers from any developmental delay? - No
Siblings - aged 3 to 16 wishing to receive post
- Shamus (10/09/2001)
He enjoys ps4, dvds, playing rugby and teen boys clothes. He plays rugby and is a sprint runner who can run 100m in 11 seconds flat.
- Kacey-Marie (22/02/2003)
She enjoys make up, hair products, perfume and dance wear. She is a ballroom and latin dancer at a competitive standard, and also competes in rock and roll, freestyle disco dance.
- Kendall (17/02/2004)
She also enjoys make up, perfume and gymnastics. She also competes in disco freestyle dance and rock and roll, and competes as part of the British Gymnastics tumbling team.
About - Brooke H
Story written 2016
Brooke was born on the 18/01/08 at 7:27am, as soon as she was born the midwife noticed she had a distended stomach and she was taken to the special care baby unit. However, things quickly turned serious and within a few hours we were waiting for a bed at any intensive care unit that had a bed. The only hospital that could take her was Sheffield Children’s Hospital. The following day Brooke was transferred via Embrace to there. When we were there nobody could understand why my tiny baby had not pooed and why her stomach just kept expanding. She had test after test but still nothing showed up. Finally at four weeks old she was rushed to surgery as an emergency case, where they discovered she had a perforated and twisted bowel. She had to have 10cm of her bowel removed and had an ileostomy fitted,this meant having to have a stoma nurse come in daily to ICU. At five weeks old she was diagnosed with cystic fibrosis, this also happened to be my other daughter’s fifth birthday. At 11 weeks she had the ileostomy reversed. However, this did not stop Brooke from getting infection after infection, and she remained in ICU for five months, before finally being allowed home to her family. Throughout her stay she was hooked up to many machines, as she was also nil by mouth for four months.This was due to all the infections, surgery procedures and diagnosis of CF she had been through, so she needed lots of medication to keep her alive.
Since leaving hospital Brooke has suffered with an eating disorder, struggles to gain weight (currently weighs 2 stone 10lb at 8 years old) She also takes many daily medications, nebulisers, has physiotherapy and still after all this fights life like every day is her last. She is such a strong girl who enjoys every aspect of life.
Update 4th January 2017
Brooke has had a continuous cough for a month or so. We have tried extra antibiotics for 2 weeks like usual, but this hasn’t cleared it, so we are currently on the second 2 week course and hoping these will work. The next check up is February so fingers crossed it’s cleared before then, otherwise she might need to be admitted for IVs. We have all had a fantastic Christmas enjoying the sun of Cape Verde. Came home for Christmas Day to all her presents.
Thank you to every single person who has sent any post/gifts to all our family, including me 🙂 We really appreciate it and wish you all a super year xxx
Update 4th November 2016
Brooke has been to clinic again since our last update, she has put a very small amount of weight on but grown over a cm in height!
She’s been having a lot of aches and pains which is unusual and I’m quite concerned, I have mentioned them to her consultant who says to keep an eye on her.
She has recently started swimming lessons in the hope it will also keep her lungs clear! Other than that nothing major has happened, we are just plodding along trying to stay well. Thanks to all who have written and sent gifts
Update 2nd October 2016
Brooke has been doing quite well since our last update, she’s had a few coughs but nothing major, she’s still struggling with food and weight gain but that has become the norm. She’s still taking part in her dance and other activities, and recently took part in an inter school cross country competition – to take part is an amazing achievement for anyone, to come 2nd by been pipped on the line for 1st place for a young girl who has cystic fibrosis is an even bigger, amazing achievement and that is what Brooke did- she came 2nd out of about 40 girls from our district!! She did collapse over the line and did struggle to breathe but with me there we brought her round quite quickly so no hospital treatment needed!! I was the proudest Mum in the whole world that day, she just never ceases to amaze me!! She’s also had her dance exams this weekend and performed brilliant. Thank you post pals for all the kind encouraging words she receives, it’s very much appreciated!
Update 6th September 2016
Brooke is doing really well at the moment, at last clinic she had a little tickle so she is on extra antibiotics as a precaution. Her weight is still a concern, but I think we are all getting used to the idea that Brooke will only put tiny amounts of weight on each clinic visit. Thank you everyone for all your post.
Update 7th August 2016
Brooke’s doing quite well at the moment, she has got a slight cough which we need to keep an eye on. She lost weight at her last clinic, so we need to keep an eye on that too.
Other than that she’s doing well, enjoying the school holidays. Thank you for everything that the children have received, we are truly grateful.
Update 7th July 2016
We are having a tough eating month, for some reason Brooke seems to be eating less and less and the last thing I want is for her weight to drop, as she hasn’t got enough to lose. I’m going to let the clinic know when we go. She’s also been a bit chesty, but nothing I’m too concerned about at the moment. She is quite well in herself thankfully and has just had a dancing competition.She danced amazing and made it to the final in under 12 street dance, which is an awesome achievement at 8 years old! Thank you to all you amazing people for all the letters, cards and gifts that all my children have received, we are extremely grateful.
Update 2nd June 2016
Brooke has been to clinic this morning for a check up, her CT scan has come back clear so that’s a massive positive. She has gained 200g in 8 weeks, so there’s still lots of concern over that! In herself she is still doing well, lots of exercise to try keep her lungs healthy. She has recently started athletics as an extra activity.
However, she’s had a pretty tough bank holiday weekend, on the way to Chessington World of Adventures we were involved in a serious car accident on the motorway.Our car was a write-off, but somehow we all walked away with minor whiplash.Brooke and Kendall were in the back seats and took most of the impact, causing both to bang their heads and more serious whiplash!! However we tried not to let it spoil our weekend.
Update 3rd May 2016
Since our last update Brooke had to have a CT scan due to the drop in her lung function, we are still waiting on results though. She handled it very well, even having a cannula fitted without numbing cream. She has started to become more breathless after exercise, which is unlike her, so hopefully at next clinic we can get that mentioned. She has started another activity to try and help with more exercise- running, so hopefully this will help build her lung function back up. She is fine in herself, but she is starting to understand she’s different, and gets upset regarding her illness- which is awful for us.
Thank you for all the gifts/cards they’ve received, we are truly grateful.
Update 2nd April 2016
Brooke has been to clinic again since our last update, she had a small weight gain and a big height gain so we’re hoping that this means she’s getting enough nutrition. Consultants are still concerned about her weight though. Also her lung function has been dropping over the last year, so we are just waiting for a CT scan for her lungs, to see if there is any damage that may be causing this. She has also been falling quite regularly, but we have been advised to just keep an eye her, as it could be due to the massive height gain. Also we have finally found out what her second gene is, it’s an extremely rare one and not much is known about it.But this will help the other 3 children when they are older to decide if they want to find out if they are carriers. Other than all the above she is doing well in herself and is looking forward to going back to school after the Easter break. Just want to say a big thank you to everyone for all the gifts and post that has made my brave princess smile.
Update 3rd March 2016
Brooke is doing quite well at the moment, she doesn’t have a cough which is great for her lungs.However, we are struggling convincing her to eat her meals. This is not good for her weight gain, because if she does get a cough it will be harder to fight infection. She has started to try do her own medication with supervision, which is fantastic.
She’s doing really well at school and is still dancing regularly to try and keep her fit.