"My son Anish has exon deletion 3-30.He is 3.5 years old"
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Brooke Lyons
- Seaford, DE
- United States
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once you get the diagnosis, what do you do? How do you move forward?
Started this discussion. Last reply by Brooke Lyons Jun 18, 2013. 4 Replies 0 Favorites
I am so terribly confused...actually I am running the whole gamut of emotions. Part of me would like to stay in a bliss of denial yet I know that I can not. How have you moved forward and fought…Continue
Exons 3-30 inframe deletion newly diagnosed info please
Started Jun 10, 2013 0 Replies 0 Favorites
My son is 14 months old and we just got his diagnosis confirmed last week. The doctor is saying a cautious Beckers diagnosis/borderline Duchenne? Has anyone had that or a similar deletion? How are…Continue
CPK of 26,970, please help
Started this discussion. Last reply by Andrea Cleary May 31, 2013. 5 Replies 0 Favorites
PLEASE help. I will try to make this short. My son is 14 months old had has been developmentally delayed since he was about 9 months old(when we first noticed something was not "quite right"). HE…Continue
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"Wanted to know abt CAT-1004.
We wanted to participate in thr trials. Sent mail to them regarding this but received no reply
Can you plz help me out on this.
I know it's difficult to participate from India but do they have any collaboration with…"
"3-30 should actually be BMD because it is in frame. We only got our confirmed DMD diagnosis once we had a biopsy and western blot test. We have chosen to not take steroids. Ryker has been in the CAT-1004 clinical trial for for 15 months and is doing…"
"Praying for your son, and your strength as well."
"Andrea, thank you so much for sharing Welcome to Holland with me. What a beautifully written story that is our lives. Thank you all for your kind words of encouragement."
"Dear Brook,
Both Andrea and Andrew' words are very true and very precious. I have learnt from them a lot.
You can fight for him, you can do it since you are his mom. MOM will never give up.
With share.
Trinh
"
"Its very overwhelming at the beginning. Take some time for yourself to come to terms with the diagnosis. You don't need to jump into steroids or anything else today. At 14 months old, there's not a lot you can do that is…"
once you get the diagnosis, what do you do? How do you move forward?
I am so terribly confused...actually I am running the whole gamut of emotions. Part of me would like to stay in a bliss of denial yet I know that I can not. How have you moved forward and fought for your sons? I feel as though my hands are tied. I don't understand all the talk of research and science. I want to help my son but how??? My doctor does not want to start steroids until he is at least 5. What do your docs say? Isn't early treatment best? Side note, my son is 14 months. Is…See More
"Brooke, Wyatt started walking around 13 months. He is still doing very well. At our last neurologist visit he was actually faster and stronger! He can ride a bike without training wheels but does get pretty tired. He has figured out how to limit…"
StaffPPMD left a comment for Brooke Lyons
"Brooke -- We'd like to connect you with our Genetic Counselor, Ann Martin regarding the questions you have about your sons diagnosis. Please feel free to contact Ann at Ann@parentprojectmd.org or 201-937-1408."
"My son was diagnosed at 15 months. he is mow almost 7. He has a very large deletion also 18-41. Please message me ...I know the shock at such a young age"
Profile Information
- About me:
- Very busy mom of 3 beautiful kiddos. Newly diagnosed and nearly overwhelmed. As my husband and I are just dabbling our feet into the frightful waters of MD, I am happy to have found this site for support and information.
- About my family:
- we have 3 beautiful children. Our oldest girl just turned 13, yopungest girl will soon be 8 and our Tud Muffin, Ryker is 1.
- Name(s) of child(ren)/individual(s) with Duchenne:
- Ryker
- Age(s) of child(ren)/individual(s) with Duchenne:
- 0-3
- City:
- Seaford
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newly diagnosed with a cautious Becker's MD, info please
Posted on June 7, 2013 at 2:33pm 3 Comments 0 Favorites
My son Ryker is 14 months old. I just spoke with his neuromuscular specialist and she confirmed via his DNA and chromosome microarray that he has exon deletions 3-30 but the DNA test is showing that he is making minescule amounts of distrophin so she is cautiously diagnosing him with becker's but wants us to understand that by the time he is 5-7 it could change to Duchennes since he has such a large deletion and he could stop producing the small amount that he is now. She said that it is…
ContinueComment Wall (6 comments)
- At 10:55pm on March 11, 2019,
Swati said…
- My son Anish has exon deletion 3-30.He is 3.5 years old
- At 10:54pm on March 11, 2019,
- Wanted to know abt CAT-1004.
We wanted to participate in thr trials. Sent mail to them regarding this but received no reply
Can you plz help me out on this.
I know it's difficult to participate from India but do they have any collaboration with hospital from India so we can be a part of study
- At 10:45pm on March 11, 2019,
- Hi
- At 9:39pm on June 12, 2013,
Jessica Rownd said…
- Brooke, Wyatt started walking around 13 months. He is still doing very well. At our last neurologist visit he was actually faster and stronger! He can ride a bike without training wheels but does get pretty tired. He has figured out how to limit himself by taking breaks.
We are actually going to the PPMD conference in two weeks. I hight recommend going if you get the chance. It is my recharge for the year.
Please keep in touch.
- At 9:58am on June 12, 2013,
StaffPPMD said… Brooke -- We'd like to connect you with our Genetic Counselor, Ann Martin regarding the questions you have about your sons diagnosis. Please feel free to contact Ann at Ann@parentprojectmd.org or 201-937-1408.
- At 5:44pm on June 7, 2013,
KarstensMom said…
- Hi Brooke. I just read your message about your son. My son Karsten has the same deletion as yours. He was also diagnosed young, 5 months old, it was a fluke we found out so early. He does have a diagnosis Duchenne, but I have been told it could be a severe form if Beckers. There is no way to know without a muscle biopsy. He is 6 now and doing well. I am sure you have lots of questions and concerns, I know I did and still do. I am willing to answer any questions you have about how my boy is doing and what it has been like so far, just ask. You can email me at jaime_chesnut@yahoo.com
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