Guest Post- Rosie Watts- Helping Paul

I love when I am contacted by people out in the community who are making a difference!  Today I am proud to share the story of a young man named Paul.

*From Rosie Watts- "Thank you so much for this opportunity Kristi. Here is the blog: I have also attached a video of Paul and some of the boys doing music at the new inclusive school :)"


Hello everyone,

I would like to thank Kristi for the fantastic opportunity to share Paul's story on her blog. I think the motivation Kristi has for helping people is fantastic, you really are very inspiring.

My name is Rosie Watts, and I have been working in Ghana with children with special needs during my summers from University. I worked for 6 weeks this year in Kumasi Children's Home, where I built a sensory room filled with specialized activities for the children with special needs. I have also been helping to renovate the school to make it inclusive for every child with special needs in the home.

One of my main current charitable projects in this home is helping a young boy, called Paul. He has a diagnosis of neurofibromatosis. Paul has been in the Children's Home for around 5 years, he was abandoned there when his face and head began to grow abnormally, mostly on his right side. Since then, his head and face have continued to grow abnormally however physically and cognitively, the rest of his development has occurred seemingly as normal. It is not known exactly how old Paul is now but the home suggest between 9 and 12 years of age. The excessive deformities of his face and head have seemed to develop gradually over time and over the past two to three years have begun to crowd and obstruct his vision to the extent that he is now operating as fully blind.

 An Image of Paul at school when I took him this summer. 

As soon as I met Paul in summer 2013, I fell in love with him and he was the individual who inspired to return to Ghana. He is the most amazing, positive young boy despite his condition. He loves cuddles and kisses and lots of attention, which the children in the home often do not get. Every morning when I arrived at the home he would come running up to calling my Ghanaian name ‘Ama, Ama’, we would greet with love and it would put a smile on both of our faces. Paul now attends school which he absolutely adores and he is really thriving in many ways.

Mine and Paul's morning greetings. The smiles say more than words could ever say. 

When I was in Ghana this year I took Paul for various medical check-ups such as CT scan and am currently using my trusty team over in Ghana to continue this, I am in the process of arranging for Paul to get a biopsy to determine whether his condition is benign or malignant. I have now received the scan results back and have sent them to multiple neurosurgeons and professionals specializing in neurofibromatosis, as well as a range of support groups. I am in the search of information to increase my knowledge of the treatment that Paul needs and also for a neurosurgeon and a team of Doctors relevant for Paul who would be willing to operate on this amazing young boy.

Furthermore, I am looking for support in fundraising for this project, if you would like to be involved in this, email me at helpingpaul@hotmail.co.uk

For more information on Paul and the other work of Helping Paul please take a look at our website –
http://rosiewatts4.wix.com/helpingpaul
Or our blog –
http://helpingpaul.blogspot.co.uk/

Thank you everyone for reading about mine and Paul's story and helping us on the journey we are to embark upon together.
I love Paul so much and miss him everyday being here in England, but this only drives even more to get Paul the medical care he needs. With the determination and love that I have, I really feel that this is achievable.

   

Importance of Participating in Research

When I was first diagnosed with Neurofibromatosis, the last thing on my mind was to tell the world about it. I, in fact did the opposite. I did every thing I could to hide from the world, and hide, as long as possible, my NF.

But you can only run for so long, before reality and the truth catches up with you...and it did for me, in a big way.

It took a lot for me to accept the reality of having to deal with having this life altering disorder. I didn't like it...I didn't want it...And I didn't think it was fair! But after I chose to break down the walls of denial, and build up some power to fight back, I began to accept it, and even embrace it.

When my children began showing signs of issues, I began devouring as much information as possible about Neurofibromatosis. I impressed and sometimes scared my husband with how much information I was taking in.

I started support groups and websites, I even enlisted in on-line surveys and signed up for NF studies that took me across the country. I wanted to stand up and shout to the world that I had NF, and then teach them about it!

Doing all of this has help me grasp my reality, and the reality for my children. I have learned so much and can now be an advocate for them, and possibly for many others, who are struggling to accept their own reality.

NF does not have to be the end. I know that the pain it causes can be extreme and in many forms, but you must fight through it. Finding something other than your own pain to focus on has truly helped me get through this....and one of the best things I have done, so far was to participate in research and since NF is so broad, there are many areas that Drs are very interested in.

Last July, my brother and I took part in a study about NF variability. We were treated like royalty, while we underwent 3 days of MRI's, blood draws, dental consults, photos, imagry and one on one genetic counseling! Try getting all that, with your insurance coverage!

It was amazing, the doctors who were doing the study truly cared about the person in the study, not just the results. I finally found a place that understood everything I was trying to communicate, for so many years. It was like -- I found someone who spoke my language!

Six months after that study, I was invited (yes invited) back to have surgery performed by a well known plastic surgeon. (Tummy tucks not included this time...darn) I stayed 6 nights this time and ended up meeting a woman who I will be life long friends with.

So many good things have come from participating in NF research and reaching out to others. I hope to be a part of future research and do plan on getting my children involved.

Please, reach out, get involved!

www.NIH.gov

for more information, or contact me directly at kristi.hopkins@gmail.com

Whacky Wednesday

My daughter looked at me the other day, after I mentioned being a little scared for my trip to NIH. "Aren't you a little old to be scared of doctors?" she asked. I rolled my eyes at her and drew her near to me. "You can be too old for a lot of things, but you are never too old to be afraid." (quoting one of our favorite holiday movies 'Home Alone')

My inquisitive little 9 yr old daughter began asking questions about why I was going to a hospital "ALL the way on the other side of the planet"...

She knows about Neurofibromatosis, at least she knows her mommy and 2 sisters and brother have it...But I thought I would take this opportunity to teach her a little about the disorder. (I mean hey, that's what we are all trying to do here, right? And you never know, she may just grow up and be the person to discover a real cure for NF)

So I went to the handy dandy Netbook, and typed in WWW.CTF.ORG ( I love this site ) and read to her the definition of Neurofibromatosis. I was amazed at her understanding and praised her for wanting to know more about this lifelong disorder.

As I was talking to her about the tumors that mommy has (glomus tumors) I told her that they cause mommy a lot of pain. "The drs here don't know much about NF, honey so I'm going to a place that knows ALL about it."

"I thought Drs were supposed to know everything though...why don't the ones here know how to help you...?" LOL My reply to that question could go on forever....but, I simply stated that there are soooo many illnesses, and diseases out there and not enough doctors. Which is true.

"How do we get more doctors to know about NF Mommy?" (Dang this girl is smart!) I hugged her and told her, "We just keep fighting, keep talking, and we don't hide from what scares us." She just looked at me and said something that melted my heart...."You're the bravest mommy I know, I will miss you when you are gone."

Another person educated about Neurofibromatosis.....will you take the time today to teach someone about it?

I want to be like you....

My 13 year old daughter looked at me, after I told her I was going back to NIH (National Institute of Health) -- "I wish I had NF, like you, so that I could go with you."

Her eyes filled with tears and I just hugged her.

She had no idea what she was really saying, she just wanted to be close to me. But her words melted my heart.

What frustrates me is that she DOES have NF - but like me at her age, she doesn't appear to have any remarkable symptoms other than the cafe au lait spots. Dealing with Rachel and Braden seems easier, since they have specific needs to address, but I battle with getting Bailey fully checked out, for fear of what we might find.

It may sound stupid coming from someone claiming to 'Thrive with NF', but I battle with the same sense of denial about Bailey that I battled with for years about myself.

We've got her scheduled next year for some initial tests, and hope to get some answers. I know she has NF, and I've told her she does. It's time for both of us to discover what that will mean to her future health, instead of hanging on to the hope that it'll just go away.

Thriving isn't easy. It isn't always consistent. It's a goal to live up to - an attitude that must be reinforced. The nice thing about Thriving, though, is that even when you fall off the wagon for a day, or create a blind spot in your journey, all you have to do is take a new action to get right back into the zone.

I pray Bailey never has to go to NIH, or deal with the many issues I and so many of you struggle with every day. But if she does, I want her to know that I AM here for her - eyes wide open and Thriving attitude in place.

Are YOU Thriving today?