Has your child been diagnosed with MSS?

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The following is a collection of advice from parents and caregivers of children and adults with MSS. 

“Appreciate your child’s own story because even amongst our MSS group, each of these sweet babies is unique. For me, I try and have no expectations because I start to worry too much. Worrying is like a rocking chair; it gives you something to do but gets you nowhere. In her own time, Bailey has exceeded my wildest dreams of what she may become and will continue to do so.”

“Information is coming at you from every direction, and it can be so overwhelming. Take a deep breath. This sweet child is still the same exact one you loved before you ever knew that Marshall-Smith Syndrome existed. I’m not going to say it’s easy, but I promise you it’s worth it. Yes - you will wonder why, and you will grieve the life you expected before the unexpected happened. You are not alone. We have been in your shoes and will walk alongside you on this journey, just as others have done for us.”

“Miranda never had anything going for her from birth. She never walked or talked. She did not have fine muscle control. She was trached and oxygen dependent and had frequent seizures where she quit breathing and had to be bagged back to life. She required 24-hour, eyes-on nursing care. She didn’t care. She was unconditional love personified. She was always full of joy and mischievous. Her soundless belly laugh would make everyone around her laugh with joy.

She had a full and productive 23 years without any of the surgeries that are available now. There will always be a deep hole in my heart that no one else could ever fill. So along with the endless ER visits and doctor’s appointments and frustrations, also be prepared to be continually amazed and bathed in love and pure joy. And be so thankful that there is research and shared knowledge and friends available to support you.” (Lynne, nurse to Miranda for 22 years)

“Life can get a bit challenging at times yet remember to keep positive with a loving and accepting attitude. MSS children heal and thrive off attention and happiness.”

‘Every child is unique. Learn all you can about/for your child because you will be come your child’s biggest advocate. MSS children are HAPPY and very easy going. It’s okay to mourn the loss of the child you expected, but you’ll find the love and rewards of these children are immense.”

“It seems overwhelming right now, but just take it one day at a time.”

“When I wrote my book, The View From Four Foot Two, I discussed my feelings about Lindsay's initial diagnosis of Marshall-Smith Syndrome. It was 1979. There were only two cases in the literature from 1970 and both children died by 20 months. I was horrified, I cried, and cried, and then regrouped. Once the shock and disbelief became a reality, I was ready to take on this mysterious syndrome and not let Lindsay be a statistic. Everyone needs to grieve for a period of time and then living begins. The following are the things I value the most and have kept them close for years - Lindsay turned 44 in May.

• Look at your child with love and make each day beautiful.
• Don't compare your child to anyone else - it will not serve you well.
• Read books and talk to your child all the time.
• Find reputable doctors who are compassionate and treat your child with dignity.
• Become familiar with all of the literature on MSS - you will become the expert and armed with valuable information that doctors and the general public don't have available.
• Always get a second and third opinion on treatment, surgeries, and medication.
• Find out about services for special needs children in your school district. Early intervention can start in infancy. 
• Go to physical, occupational, swim, feeding, speech therapy and any other therapy you deem appropriate. Start early!!!!!
• Be social and take your child everywhere.
• Teach your other children about MSS and have them create a bond.
• If you don't have other children, it's fine to consider having more babies. MSS has not been repeated in any other families to date. I had three healthy sons after Lindsay. I now have seven grandchildren and another one on the way.
• Take time out for yourself - have some fun.
• Go out with your spouse - find a reputable babysitter or have a family member help out.
• Be proud of your child's accomplishments whenever the milestones are reached.
• Live life, go back to work when possible, have a positive attitude and keep moving forward.”

“Take your time to grieve the child you dreamed of having your whole pregnancy. This helps to open your eyes to see the unicorn you now have, to love them wholeheartedly as this journey begins. Your child is incredibly unique; treat them as such.” 

"Take it all day by day, be patient, and don't ever give up!"

"Enjoy the journey and the mini destinations along the way. It won't always be this hard. We get the beautiful gift of looking at life through a different lens. Also, it's OK to allow yourself to grieve, and then forgive yourself. Your child's diagnosis is not your fault. Find your support system and cling to them. Always advocate for your child. You are doing the best you can. You are doing enough for your child. In the midst of it all, don't forget to live."

"Our life with Mark has been an adventure! What I have learned is MSS kids are beautiful, genuine, lovable, strong, and deserve to live their lives. We have tried to make decisions that will improve the quality of Mark's life. Each time, gather as much information as you can: listen to the doctors, seek out second opinions, talk to other families, listen to your gut, and then make the best decisions you can based on the information you have."

"Advocate for your child. No one knows them better than you. So if you have questions, ask, and if something doesn't feel right about a treatment, procedure, therapy, medication, etc., don't be afraid to speak up. Don't ever be afraid to ask for a second opinion on your child's health or push for any of the specialists your child needs. Our child's condition is unique and delicate. Our approach to their health care ought to be the same."