#smaawareness

[ashleyslilshop]

#SMA is very near and dear to my heart and the hearts of my family.

In 1998, I was blessed with a beautiful and seemingly healthy little girl.

Brooke was the JOY of my life !!

Only 5 short months after her birth, we learned through diagnosis that Brooke had Spinal Muscular Atrophy, better known as SMA.

Our lives were forever changed that day when she was diagnosed, although we continued to find strength and hope in the resources and care we found in the community of others walking this journey with us in the SMA community.

#FamiliesofSMA was a vital source of information and support as my family dealt with the reality of SMA.

August is #SMAawareness month and each year, in memory of my daughter Brooke, it is my honor to give back to the organization and the community who gave so much to us during our time of need.

I ask you to please help me #raisefunds for  Families of SMA as they continue to provide resources, support and search for a #CURE of this horrific genetic disorder.

To learn more about Brooke and our story please visit us @ https://www.facebook.com/MySMAAngel

3 ways you can help support:

Shop all your favorite Avon~PamperedChef & Norwex products + receive FABULOUS discounts & specials all while supporting #CureSMA from July 1st-July 31st 2020 by following this link http://www.ashleyslilshop.com/sma-awareness-fundraiser.html#/

Thank you for your support,

Ashley Hendrickson

TOGETHER WE CAN FIND A CURE!!

In Loving Memory Of Brooke

June 11, 1998~December 18, 2002

[dwbroodle]

This was a drawing I did for a mother whose baby had SMA and passed away from it at only a few months old. They did not have pictures of their child without tubes in its nose- so this was an effort to create that Picture. SMA: Categorized by type and age of onset, SMA causes many physical symptoms that can become increasingly disabling with age. Symptoms vary among the three SMA types and may include progressive muscle weakness and atrophy http://www.facebook.com/DWBroodle #sketch #SMAawareness #sketchart #artistsupport #learningart #artistsofig #sketching #sketches #sketchoftheday #sketchdaily #digitalartist #artistsofinstagram #pencil #blackngrey #portrait (at Bay City, Michigan) https://www.instagram.com/p/B_w894Xpad-/?igshid=1g0kdczevjis4

[henryskat2014]

Some of us @boostfit_classes ladies wanted to show our support especially on Lily-Mae's birthday. You can get involved too. Snap a selfie wearing your pink lippy, add it to social media using the hashtags #PinkLippyDayForSMA and #PLD2018, tag 3 friends and don't forget to donate. Just text PLDY88 followed by your donation amount eg £2, £3, £4, £5 or £10 to 70070. #HappyBirthdayLilyMae #SMAawareness #Pinklippy #spinalmuscularatrophy #donate #charity #Lilymaeforsma

[smaitforward]

#kNOwSMA Today, the second Saturday of August, is the annual "Worldwide SMA Candle Lighting Day" It is a day of remembrance of all SMA Angels and to honor SMA Warriors continuing their fight. I ask you do you kNOw SMA: Do you kNOw an SMA Angel? Someone that died from SMA? Do you kNOw a SMA Warrior? Someone living and battling SMA? Do you kNOw what Spinal Muscular Atrophy, SMA, is? Are you just hearing about SMA for the first time today? If you can answer YES to any of the following questions PLEASE light a candle today and post it with the #SMAawareness and to be sure I am linked add #SMAitFORWARD Help us bring light and unity to a disease that can surround a family with darkness, fear and isolation. Isaiah 42:16 I will turn the darkness into light before them and make the rough places smooth

[katyrosephotography]

Ended O.T. with a super fun scooter ride! #yayyyyyy #scooter #occupationaltherapy #cfawareness #smaawareness

[dagger-of-moonlight]

Infant suffering due to incompetent doctors

Okay, everyone. A while ago I made a post about my nephew being the hospital with SMA(Spinal Muscular Atrophy), and needing help with the funding necessary for his care and equipment. 

This post is about asking for prayers for him and his parents as they are bombarded by the doctors at the hospital trying to guilt them into just letting him die. Since being in the hospital, the doctors have not followed protocol for treating SMA children, and it has resulted in his deterioration. When he went into the hospital, he was able to hold himself up in his bumbo seat, breathe and all that on his own. Since his admission to the hospital, he is now on a ventilator and has barely been able to move. His mother hasn't been able to hold him, and it has been an overall miserable experience for him and the family as a whole.

My sister and her husband were told in a conference with the doctor that two days ago, when they extubated Gavin, and tried to re-intubate him, they almost lost him. That was the first they'd heard of the situation, and the doctor used it as a way to try and convince them that letting their son die was the best decision. It was heavily implied to them throughout the whole conference that they should let him die using emotional manipulation such as, trying to convince them that they would get a divorce if they attempted to prolong his life due to the stress it would put on them, and trying to make them feel like they were being bad parents by not wanting to let him go. 

In spite of this, they are continuing to fight for their sons life. At this point, the doctors want to perform a tracheotomy on Gavin, which would essentially be a death sentence for him. He would no longer be capable of nursing, and it would keep him on the ventilator indefinitely. Soon they will be having a conference with a patient advocate, and an SMA specialist. 

Prayers, good thoughts, etc. would all be very much appreciated during this time. My nephew is only 11 months old now. The insurance he is on won't pay for a transfer to a different hospital, unfortunately.

Also, anyone who lives in the San Antonio, TX area, keep your children away from Methodist Children's Hospital. It is not worth the risk of your child or a child you know and love to be stuck in a hospital where they could be admitted without proper/adequate care. Even if the hospital is 'pretty good' with the average child, there is always that chance that there may be something more 'difficult' to deal with. It isn't worth the risk.