Fundraisers

 

The time for a handicapped accessible van is getting here quickly.  William is getting too heavy for Braley to pick up high enough to put him in a car seat.  He is just dead weight and Braley isn't strong.  All we need is for her to hurt her back!  The very good people at First United Methodist Church in Macon (where Braley grew up) has organized this Love Offering.  There will be 15 churches in the county participating.  Actually, I didn't know there WERE 15 churches in the county.  This effort has really humbled us, and we feel that it's a "God Thing."  Seems that God is putting William on people's hearts, and they are responding. 

 

 

 

 

 

This isn't the only fundraiser being conducted.  A couple of Braley's childhood friends have started selling T-shirts online.  The profits from this effort will be going towards the Van Fund.  God is GOOD!
Gwen

T-SHIRTS, ETC.

Friends, Emily Quinn, posted this on facebook. The shirts are nice and serve 3 purposes. 1) to spread awareness of Batten Disease, 2) to raise money toward a handicapped accessible van for William, and 3) to cover your body. Sounds like a win-win to me. Thanks, Gwen (proud grandmother)

(THE T-SHIRTS FROM THIS SOURCE IS OVER.  NEW T-SHIRTS COMING.  WILL POST MORE LATER ABOUT THEM.)

Please order t-shirts here to help the Braddock family raise money for a van for William. I would like to introduce you to my beautiful friend, Braley; her husband, Jason; dauhter, Addie; and 4 year-old son, William. Braley and Jason both went to high school with me at Central Academy in Macon, MS. Braley and I were also “brought up” in the same church, and have kept in touch throughout the years.

 This past year, this family has been through more than I can ever bear to imagine. William began having sleepless nights and having a speech delay. After many, many tests it was concluded that he had Late-Infantile Batten Disease. I had never heard of this disease, so I after I googled it, I realized the difficult road not only Braley, Jason, and William had before them, but the whole family had in front of them. They have an amazing sense of strength and faith in God, and I can only pray that I have the same if I ever come face-to-face with a similar trial in life.

Kendrick Higginbotham Adams and I decided that we would like to do something for them in addition to the prayers we have been sending, so we thought a t-shirt sale would be a great way not only to raise money for William, but also to spread awareness. I am asking my friends, to buy a shirt and to also share the link. We will arrange delivery of the shirts once they are in. For those of you who are not around the North MS, Macon, or Arkansas area, I will mail them to you at no additional charge. The Braddock family will get 100% of the proceeds from this fundraiser. William can no longer walk, and they are saving their money for a handicapped accessible van.

I know many of you are wondering what Late Infantile Batten Disease is, so I have added the next information from William’s Facebook Page “William’s Journey.”

Late Infantile Batten Disease is a rare genetic disorder in which both parents each carry a copy of the same defective gene in order for their child to have the disease (one out of every four of their children will have Batten disease). William's older sister, Addie, doesn't have Batten, but she probably has the recessive gene. The odds of having a child with Batten disease is about 2 out of every 100,000 live births.

There are four types of Batten disease: Infantile, Late Infantile, Juvenile, and Adult onset. Approximately 200 live in the United States with Batten disease. A family will only carry 1 type of the disease. William has the second most deadly form of the disease, Late Infantile. The life expectancy for Late Infantile is 8 to 12 years, but often takes them sooner. The child can show symptoms between ages 2 and 4.

In the beginning stages, William was diagnosed with PDD-NOS because he had delayed speech. Batten disease rapidly causes loss of muscle coordination/weakness (clumsiness at first) to the point of losing all ability to walk, to use their hands or play with toys, to talk or even make sounds, to eat or swallow anything, and they go blind unable to watch their favorite cartoons. The children have intractable (uncontrollable seizures) all day long and the disease only progresses. It doesn’t get better day to day. It only gets worse as they progress, and it progresses at a rapid rate. And for the family, it is a heartbreaking, breathtaking, and very helpless process. There is no treatment at all, and there is no cure!

To us, Batten Disease mimics, looks and feels like that of Alzheimer's, Muscular Dystrophy, Uncontrollable Epilepsy, Parkinson's disease along with total blindness, and the inability to swallow, or speak anything at all. Please go to “William’s Journey” Facebook page and “like” it. We are hoping to bring more awareness to this rare disease by “liking” and “sharing” his page. Thank you!

(THE T-SHIRTS FROM THIS SOURCE IS OVER. NEW T-SHIRTS COMING. WILL POST MORE LATER ABOUT THEM.)
If you would like to order a t-shirt, please follow the directions below: BATTEN DOWN T-SHIRT Go Here to View THE T-Shirt: http://www.thegraphiccowcompany.com/tgccproofs/184705.jpg COPY AND PASTE THIS AS THE URL: http://www.thegraphiccowcompany.com/t-shirtbanker/signup/ Copy and Paste this Sign-Up Roster Code when Requested: TH418201353724PM82 When it asks for the Organization, go down to the bottom of the drop down list and select NONE or DON'T use an Organization... Follow directions after that for payment, etc. If you have any questions or need assistance, please contact: Miranda at 800-472-3269 or by e-mail: miranda@grafcow.com

  Please Report any Discreptancies in Your T-Shirt Order within (2) Two Business Days To Your T-Shirt Chair: EMILY QUINN - mord3@yahoo.com. The Graphic Cow can not be Responsible for Any Discreptancies Reported after (2) Two Business Days.

William's Journey April 11. Our appointment with the new neurologist was a complete 180 degrees turnaround from our previous experience. This doctor wanted our records from St. Louis and asked detailed questions regarding William’s past, etc. Our previous doctor was agitated that we went somewhere else. He said his 3-year old had a problem sleeping and that it wasn't anything new to parents. LOL!!! Needless to say, that was the last time we will be seeing him. My only problem with the new doctor was that I could only catch about half of what she said because of her Indian accent. However, we are going to give her a shot. We are scheduled to go into the Arkansas hospital on the 29th for a 48-hour EEG. The doctor said some of William’s movements could be seizures or could be muscle related. I am to take videos of him during his “spells” and send it to her. She was very knowledgeable and seemed concerned. Now, all I ask is for my phone calls to be returned. The last doctor was paged and we tried to call him for a week with no return call. TOTALLY UNACCEPTABLE!! We appreciate everyone’s prayers. We just might have found a responsive neurologist close to home. Optimistic! Yea! Braley

William's Journey April 8. We have had a few good weeks. They have been emotional, but William experienced no significant decline. He is not sleeping as well as he had been, getting up around 2 a.m. It’s different than before because he is not agitated nor crying, but just “talking” and very calm. I could let him stay in bed, but I haven't. I go to him because I can’t stand the idea of his being awake and alone. However, I will need to sleep soon, so he might have some mornings without me. William is also losing neck muscle control. His head leans to the right. This was expected but it’s hard to see, and he has stopped walking all together. We got a new gait trainer on Friday, and he took several steps in it! It gave me chills. I was so happy for him because I could see the excitement in his eyes, but it was sad at the same time. Tomorrow we have a neurologist appointment at Arkansas Children's Hospital. I am giving them one more chance. I have switched doctors (again), so we shall see. We still have our St. Louis doctors, but it would really be nice to have someone close for emergencies. Arkansas Children's Hospital Neurology Department has let me down too many times. If they aren’t responsive tomorrow, we will try Le Bonheur Children’s Hospital in Memphis. William is a complex case. A doctor can’t prescribe his medicines and not expect to hear from us for 6 months! No, we are lucky if we only talk to our neurologist once every 2 weeks. There are always new occurrences and constant monitoring, and most doctors are not very accommodating as phone calls are non-billable hours. I know it’s sad, but that’s how things work. We are grateful for our doctors in St. Louis, but a 5 or 6 hour drive is really too far as William’s condition continues to deteriorate. Wish us luck! Braley

William's Journey March 30 via mobile. We are doing very good these past weeks, amen and thanks to god and his blessings, William has been in a great mood and no real seizures that we couldn't ward off with meds. This is a special time for us because he is keenly aware of his surroundings and wants us with him. He is showing so much personality. I was worried for a while but the increase in meds has settled in and he seems to be adapting well. For now and we are loving every min!!! Praise be to God!

School

We are doing fine; we have bad days but mostly good.  William’s seizures are getting under control with the increase in Onfi.  He is a happy child.  He knows he is loved as he feels it around everyone he knows.

We are going through a transition concerning school.  In August, William will be transferring to the special education class at Hill Farm Elementary, the same school Addie attends.  I am excited but nervous at the same time.  I will love having both kids in the same place and will actually have time to help more at the school.  We LOVE everyone at Access, William’s current school, and I cry every time I think about this transition.  I can take William to Access and know that Chelsea, Leslie and Stephanie, along with his therapists, love him; and that means everything to me.  They care for him on a level that is far more than just a student in a classroom, and that is what I want for William. I don’t have high aspirations of his learning the alphabet or numbers; all I want is for him to feel loved and wanted.
 
Addie gave me chills when I asked her about her feelings on the subject.   I know kids can be mean and wanted her to be honest with me about how she would feel about her brother going to the same school. She said, “I am excited.   Mom, I am proud of William.” It took everything in me not to cry, but I responded with, “I am proud of both of you!”

I know change can be difficult, but not all change is bad.  Everyone has an opinion on this matter, but it is a decision that we made prayerfully.  Circumstances may change and this option may not be available a little later, but for now,  William loves being around other children and that stimulates his senses in ways I could not do at home.  I have faith in the Hill Farm staff, because if I didn’t, William wouldn’t be going.  That’s for sure.  But with that being said, it is always a leap of faith to put your child in someone else’s care, especially a non-verbal child who is going blind in addition to other health issues.    It would be easy for me to keep him at home, but if I listen to my heart and do what I think is in William’s best interest not mine, school is where he needs to be.  

So, I ask for you to be in prayer for me.  William will be fine, and I have no doubt that he will capture the heart of everyone he meets.  It’s just hard for me to let go and trust another set of individuals with my son.

I have been putting off writing this blog until I could gather my thoughts.

William has been maintaining this past week which is amazing. We went a full week to school, which is great because it has been quite some time since we were able to go all week without sickness or doctor appointments. We have had a few non-stable weeks, and we are still struggling with seizures and playing with medications.

With this disease, your child can wake up without a skill that they had the day before. It is because of waste build up in the brain cells. That is why I cherish all of William’s smiles. Some children lose the ability to smile while others keep it until the end. Every day and every smile are cherished!

It also makes managing medicines and seizures extremely hard because, with this progressive disease, different areas of the brain are constantly being affected.  Medicine that worked last week will not be as effective now because the brain chemistry has changed. There is no rest in this area. William’s brain is constantly changing, and mine is always working trying to figure out what is going on, why this isn’t working, what changes we could make, and so on.  I am very grateful for my mom who is my sounding board, listening to me go over every scenario sometimes multiple times, knowing she has no clue what I am talking about but is just there to listen.

This might be a controversial topic, but I have had trouble lately understanding why God would want William to suffer so much.  I didn’t think I was angry with God, but I was, and in turn, I distanced myself from him. These were very hard weeks for me; without Him, darkness entered, and honestly, it was hard to function. It was when I reached my lowest that I cried out, “Why would you want this?” I felt his presence answer me, “Braley, I am hurting just as much as you are.  I didn’t want this to happen.  I have lost a son as well and weep for you. I am here to comfort you, please come to me.” This has helped me tremendously. There is darkness and suffering in this world, but we have a loving God that cares for us.

It warms my soul to know that others are reaching out and are concerned about our family. You will never know how much it means to someone until you are in a similar situation. God uses people to show us He cares; for that I am sure.

God bless,

Braley