Brooke (Fucosidosis)

Brooke (Fucosidosis)

Brooke has Fucosidosis.

Hi, my name is Lesley and my partner’s name is Jim. We have three children, Ryan , Brooke and Jade. When Brooke was two she was diagnosed with Fucosidosis. We were told this was a life-limiting condition and that Brooke would live only into her teenage years. Every parent with a child with an MPS or related disease understands what was going through our minds when we were told this. To us, life was over, but gradually we overcame the initial shock and just got on with things.

Brooke didn’t walk until she was two and even then she was unsteady on her feet. We moved house as until that time, we had been living in a second floor flat and carrying two small children up two flights of stairs wasn’t easy. We moved into a four bedroom house with a good size garden. We then got an extension with a bedroom and bathroom downstairs so it would be easier if Brooke’s condition deteriorated. Thankfully this has not been the case.

Well, now to tell you about our little angel!

I think Brooke is the most placid child in the world, but then being her mother, I would say that! She cannot talk, is partially deaf, is sometimes very unsteady on her feet but apart from that Brooke is in pretty good health. She communicates by making as much noise as she can, usually with her finger in her ear because maybe she feels the vibration. Brooke laughs at everything and anything. If you were to fall and hurt yourself, Brooke would stand there with tears rolling down her cheeks with laughter, then you see the funny side of things. Brooke is basically a happy child. The only thing I find difficult with Brooke is that she doesn’t sleep very well and won’t go to sleep for anyone but me. This can be very stressful and there are times when I am so tired I feel like crying. But then I look at Brooke and think that there may come a time when all she will do is sleep and then I will want her to be awake. It is ironic.

Brooke also likes to throw everything on the ground. You could walk about after her all day picking things up. It’s a good form of exercise! Her siblings are very good with her and she loves the company of other children. She will sit back and watch what they are doing but will not join in. All in all, Brooke is a blessing and she touches so many people with her innocence. If I am a better person it is through having her. Life is too short to worry about material things. Live for the day.