C/O The Old Barn
2 Cole Green
Cole Green (nr Hertford)
Herts
SG14 2NN
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

Brooklyn A's Parents/Guardians

Carrie and Chris

Brooklyn A's Siblings

Lisa 21/01/1998, likes animals, playing on her DS, golf, dancing, swimming, arts, cooking and music. Amy 25/03/1999, loves cooking, maths, art, dance, swimming, animals, playing on her DS, and her hamster Calvin.

Brooklyn A's Interests

likes watching tv programs such as Animal Mechancales, Chuggington, Little Einsteins, Mickey Mouse, films like The Bee Movie, Toy Story and Cars. Likes wooden puzzles, having stories read to him, chunky books, playing with toys which have cause and effect (i.e. music when button pressed).

Brooklyn A's Favourite Colour

Bright colours

Is Brooklyn A able to read?

No

Is Brooklyn A able to use hands?

Yes

Is Brooklyn A visually/hearing impaired?

No

Does Brooklyn A suffer from any developmental delay?

Yes

Story written 2010

Brooklyn was born on the 21st of September 2007 at just 24 weeks old and weighing 970 grams. Through his extreme prematurity he suffered respiratory distress syndrome, group strep b, high infection risk, jaundice, anaemia, chronic lung disease with Bronchopulmonary dysplasia. The paediatric team that delivered Brooklyn gave him just 20% chance of survival.

Once the team had stabilised Brooklyn he was transferred from Lister Stevenage to Luton and Dunstable Hospital but still inside the plastic bag he had been put directly into at birth.

On the 24th of October 2007, due to worsening respiratory failure whilst being ventilated, a CXR was done which showed changes consistent with chronic lung disease and patchy atelectasis, which is a collapse of the lung tissue. The diagnosis for Brooklyn was that he had a PDA with left heart ventricular over load.

Brooklyn spent his first Christmas in the NICU, eventually coming home at the end of January 2008 on oxygen. Brooklyn is now aged 2 and has Cerebral Palsy - mixed “athetoid hypertonia”. He cannot and will not ever be able to walk or sit. He has severe stiffness of the lower motor system followed by a floppiness.

Sadly Brooklyn’s chronic lung disease still remains and he travels frequently to hospital by ambulance when his breathing deteriorates.

Brooklyn has autistic tendencies too, which causes him to have many frustrations.

Please take a look at Brooklyn's CarePage to read more about him.

Update 8th August 2010

Firstly I would like to apologise for the delay in Brooklyn's update but every time I think I have 5 minutes to sit down and write something happens!

I would like to thank all who have taken the time to email, write, and send little gifts in the post. It is true to say Post Pals is a wonderful thing. Brooklyn recognises now when a package is put in front of him that there is a little goody inside and he can’t wait to dig in! He loves listening as I read his cards so please don’t stop sending him letters.

I would like to flood this page with good news and yes Brooklyn has had some really good days where he has been so happy. He recently received his TomCat tiger trike which is amazing as it gives him a chance to be pushed around the garden and even have short trips out. Because of the design, as he is being pushed around it gives him quite intense physio to his legs which are sadly still cramping up quite severely.

We tried to get Brooklyn in again for stem cell treatment but received a letter saying NO! He cannot travel by plane due to the oxygen change and is still not strong enough to undergo a general anaesthetic as he will not wake up if he does.

As a family we still persevere everyday. Brooklyn has lost a lot of his memory at the moment, so whereas before he was talking slightly saying mum dad and animals, he cannot remember any of this now.

At this precise moment Brooklyn is quite poorly as he has caught a chill to his chest which means for him that his airways have tightened up, and the paradoxal movement of his vocal chords make it difficult for him to breathe. We’re trying to keep him out of hospital, so fingers crossed. I will update again as soon as I can.

Update 14th May 2010

Firstly I would just like to say that everyone who left me a contact address should have received a heartfelt thank you from Brooklyn. Your post and kind words meant not only a lot to us as a family, but also to little Brooklyn, who I have to say had so much fun opening his cards.

I don't really know where to start on Brooklyn’s update as he has been so up and down. I think I have good news and then it all comes crashing down around us again.

Brooklyn’s health has been very unpredictable. He started the month quite positively and with lots of beans inside him and full of smiles. As a family we have been trying to keep our chin up and stay positive as we know that Brooklyn can become ill at the drop of a hat.

Brooklyn has started treatment at a centre called the CPPC which I was hoping would provide the miracle answer for him with regards to strengthening him up and giving him a better chance of a normal life with regards to his sitting and possibly walking. Sadly at the moment this does not seem to be the case. They are really trying their best but it is like we are just fighting the demon at the moment. Brooklyn has mixed CP so although the treatment is good to keep him stretched, every time they try to straighten his body and weight bear, he just collapses from his weight. I was told last Friday that the outcome for him does not look good as we can’t fight the stiffness against the floppy side of him. Brooklyn is such a happy boy it just doesn't seem fair.

He has had quite a few episodes of respiratory distress lately due to the change in the weather and will be going to hospital later today as his paradoxal movement of the vocal chords are making the oxygen intake extremely difficult. He is also running a temperature and has been unable to gain any proper sleep at the moment so we don't really have a choice but to take him in… AGAIN! Sadly, with the amount of medication Brooklyn is on, if we are unable to keep him stable at home, we have to let him go. It is always so scary as Brooklyn is so unsociable when it comes to breathing and we end up being on tender hooks each and every time, as we always seem to receive bad news.

We have also just received in writing now that the stem cell treatment on Brooklyn's brain cannot go ahead at the moment as Brooklyn is not strong enough to undergo a general anaesthetic and will not be able to wake. He also cannot travel to the clinic either as he would not be able to make the plane journey due to the change in the air pressure. We are all so sad as we don't know what will happen next.

My little boy is my life and always will be. I hope everyone who reads this keeps a smile for him. Keep your post coming as it really has made a difference to know that people do care.

Update 20th April 2010

Today Brooklyn went to the CPPC in Luton and it was amazing. They are a specialist centre dedicated to Cerebral Palsy.

Brooklyn had the right hump while we were there and so having an assessment was not as easy as I hoped. When we got there they offered us a cup of tea which both Chris and I could have bitten their arm for as it is not often we get a cuppa made for us and actually get to drink it while it is still hot!

They then took Brooklyn into a treatment room which looked amazing. The physiotherapist looked so confident and it was obvious that she knew exactly what she was doing and was extremely good at her job! The Director and founder of the CPPC also stayed throughout the assessment and answered a multitude of questions. Agnes, the lovely Physiotherapist, first took Brooklyn over to the therapy table and tried to manipulate the muscles in his legs but he screamed so loudly and tears just started to pour.

The extent to which his legs scissor became apparent to me for the first time, as I have never seen him worked in this manner. Sitting was also tried and the fetal positioning with all his weight being on the backs of his calves. He has no safety movement or control in his arms either which is a problem. I wanted to cry when I realized just how bad things are - it was as if I could see how Brooklyn's whole body would end up if action isn't taken now.
Life is hard enough for Brooklyn but watching the pain and the tears and the severity of his handicap has broken my heart yet again.

They discovered some rounding in his spine and also pointed out that he has quadriplegic CP. (which is all four limbs).

His involuntary movements are what cause him so many problems, and the fact that his brain has been damaged means that the movement that he does have is totally uncoordinated as the brain cannot differ between movements.

His hips are displaced and work almost like a ball bearing does but cannot hold the core of his body in place. We were told at the start of all this by our local doctors that if Brooklyn had not sat on his own by the age of 2 he would never sit or walk. So far this has all run true.

At the end of his assessment we all sat down and had a good chat about what Brooklyn would need if finances basically could make the stretch. They were very honest and said that Brooklyn would not manage just yet on their 5 day a week routine and it would be more beneficial to ease him into it. Ideally that means an hour a day at a cost of £41ph.

The way they spoke to me and the treatment style they have proposed for Brooklyn, has for the first time in his life opened a doorway to him having a chance at some kind of life where he can be the best that he can be, and maybe able to interact with other people on a different level that before was only ever a dream to us.

By retraining his brain and retraining his muscles to start from stage one, we may be able to get him to crawl. If this happens they are very confident of getting the core of his body to accept the seating position. All this takes time, money, expertise, and a lot of hard work from me too as I will have to set into place a whole new regimented routine with Brooklyn to help him stand a chance of achieving this.

Living away from my mum means that I do not have any help on my door step and the only person I can rely upon for help is Tammy (Brooklyn's carer) but then she can only come for 4 hours a week. So we are in a huge pickle. It is going to be hard as Brooklyn's dad is going to have to take a huge amount of time away from work to manage school runs and then he will be losing out on work as he cannot leave the girls as I will not be here.

This is all going to be very painful for Brooklyn as was seen today during the assessment and it is going to be very hard watching him undergo the intense work needed to give him a chance, but it is a chance! A chance we all thought would never be here.

Our local Trust is trying to set up a gift aid page for all who are able to, to donate towards the treatment for Brooklyn. Every single penny counts no matter how little. Having a child with so many special needs and a child that suffers daily from pain and not being able to help is heartbreaking. No-one realises just how exhausting and time consuming it is. Brooklyn's sisters are affected and so is our whole world. I am totally run down and exhausted but I have to keep smiling and I have to keep going otherwise who will be here for my family.

People like to believe that because you are smiling everything is ok but never take the time to ask if this is actually the case. It saddens me as my son doesn't deserve people to 'keep away' because he is disabled, or stare at him in his mobility chair. What has happened to him is not his fault and he is fighting to be here with his other problems as it is, so help him win his fight.

We cannot rely on physical help from anyone as this never seems to materialize so pleas send Brooklyn a smile and pray xxx

Update 19th April 2010

Hi everyone this is Brooklyn’s mum. I want to help others and I wanted to ask for some help. If I can get lots of people to view Brooklyn's story (link below) and comment and give it a 'thumbs up' I may be able to get onto the home page and then I can really start to raise awareness for poorly children. I will be mentioning Post Pals in my future blogs but I have to wait until I am at that stage in his story.

http://blogs.gurgle.com/BlogDetails.aspx?blId=20929B0EADD17E49&did=1004&UserID=3177