Emily Rapp is the author of Poster Child, her 2007 memoir about her life with disability. Emily was born with a congenital defect that required that her left foot be amputated at the age of 4.
In January 2011, Emily and her husband, Rick Louis, learned that their 9 month old son, Ronan, has Tay-Sachs disease. Tay-Sachs is a rare, incurable, genetic, progressive disease that will claim Ronan’s life in the next few years. Shortly thereafter, Emily began Little Seal, her blog to chronicle her family’s time with Ronan and their struggle with the disease.
Emily, Rick and Ronan currently reside in Santa Fe, New Mexico.
Little Seal 
Hi, Emily and Rick, it’s Jane your distant cousin from Maryland. I think about you all the time, sharing and knowing your pain and your exquisite love for your child. I pray, I cry, I hope only for your sanity and clarity of thought and memory as you parent Ronan. Peace and love for this day.
I found your blog after a google search of “little seal” and “Ronan”- this is what I want to name my child (My husband is a Navy SEAL). I am so saddened by your situation and just wanted to say that a stranger somewhere is thinking about you and your family. I know you are not religious and I am on the fence, but I do find myself praying for things that I have no control over and I will be praying for you and your family.
Emily, I am so sorry to hear of this. My thoughts and prayers are with you, Ronan and your husband.
You are an inspiration to every mother and father in similar situations. As the mother of a child with a rare and severe genetic condition called Emanuel Syndrome, I thank you for being brave enough to say what we are always thinking. His syndrome was a surprise to us and he was given one year to live. Today, he is 5 and still with us but everyday I grieve over the life he deserved. However, as you so eloquently said, I am grateful for every opportunity we have to be with him. Ronan is lucky to have you. All the best, Melissa Rabinovich
I read your article in the New York Times today. As a mother of two young children I grieve for you. Thank you for providing such clarity on what is truly important. Every moment with you child in precious.
In reading your Sunday NYT “Opinion” piece, I was reminded of a letter sent by John Adams to Henry Laurens on the death of his son, John. Despite the surrender of the British at Yorktown, and awaiting the formal establishment of peace terms, John was killed in a skirmish in South Carolina. Adams in a letter to console his grief stricken friend wrote, “I feel for you more than I can or ought to express…. I can say noting more to you, but you have much greater to say, in this case, as a Duke of Ormond said of an Earl of Ossory, “I would not exchange my dead son for any living son in the world.” Your love and courage leaps out through your touching words about Ronan.
I was forwarded your story from a friend. My heart breaks for your family and your beautiful son. My younger sister had children before me, and had the enzyme test for tay sachs and was told she was negative in her first pregnancy. We are of Irish ancestry. In fact, the test was inconclusive and with her second pregnancy she had gene testing and a mutation was identified. Her husband is Ashkenazi Jewish, and your story of inadequate genetic counseling hits close to home, especially since i am a genetic counselor myself and also married to a Jewish man. Sending you love and strength. Ronan is blessed to have two amazing parents love him through his short time on this earth.
I just read your piece in the NYTs as well as Ronan’s blog and I feel profoundly honored to have been given this poignant glimpse into your family’s painful journey of extraordinary love and loss. You have somehow managed to describe the indescribable and you have done so with incredible strength, tenderness, and raw beauty. Your deep love for your child sprang from every word and line. I wish you and your family much strength, love, and grace always.
A friend posted your NYT’s piece on facebook, and I had a rare free moment to read your beautifully written ode. My son is 18 months old, too. At 11 months old he was diagnosed with type 1 diabetes. It’s not terminal, but it’s incurable. We can’t seem to get a hold of his blood sugars, due to hormones, or teething, or a cold, or everything / anything… He has good days, he has bad days, and my husband and I have been forced to live in the moment, trying to let go of the facade that we have any control over anything at all. I feel like I haven’t been able to breathe in 6 months, and I’m trying so damn hard to keep it all together. Maybe that’s my problem, I should stop trying. I hope that I will be able to find some peace, the way you seem to have. You are truly an inspiration.
jeremiah 29:11
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.
your story has touched me. i pray for you nightly. i hope you find peace
We lost our son Joey in October 2010 to Tay-Sachs. He was 3 and 1/2. I, too, have learned about the “new normal”.
Sending positive love and energy your way,
Hi… I heard, rather , read your story here and was very touched… I don’t really know how to say this to you, but I believe I know someone who can help you. He’s helped many, here in Portugal, where I live, including myself, in a million ways which are hard to describe… His name is Robiyn-Dolphin and I can send you some information about some of his work with autistic children and wild dolphins and how he’s helped many people that haven’t been able to be helped through traditional medicine… Please let me know if you’d like me to send you some press articles that mention his work here and in other countries (like Costa Rica, where he helped the government to get rid of weapons and use that money for education and health, instead. And where the police are unarmed.). He’s a bit like a backstage doctor, helping people quietly to remember their dreams and nursing people back to health through some very unusual but powerful techniques based on love and forgiveness… Forgive me for intruding, but I could not leave you without letting you know that there is such a person on the planet and that he can help. If you want, i can send you 1 or 2 articles from international newspapers with preciser information… (I’d need your email, so here’s mine, so you can send it if you wish – teresa@atelierdalua.com). All my love and hoping this might ease your pain and help you (I’m a mother of 2 5 year old twin boys, so I know a mother’s love for her child…) from the bottom of my heart and hoping you’ll consider at least reading the articles, Teresa
I was also born with a CHD, but survived, and then my first living pregnancy daughter was also born with sever CHD.
My heart goes out to you and your family during these trying times.
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Dear Emily,
I recently came accross your story and have been deeply touched. In fact, I find that since hearing your story I’ve been carrying your family in my heart every minute of every day. I myself have two children, and often struggle with the the thought of being unable to protect them. Your words have opened up my heart and some of your courage I feel has been shared with me. I imagine that your blog is healing for you to write but it is also so much more. I have felt compelled to reach out to thank-you. Your experience shared so beautifully and openly is an incredible gift to me. It will change how I live, partner, and mother and how I relate to myself. The sadness I feel for those who experience the loss of a child is so big, and I hope for you to feel love and presence as you journey. Thank you.
Hi to all three of you,
I read your story on a greek site called http://www.eimaimama.gr (which means “I am a mum”). I was deeply taouched, as my brother who has passed away (it’s 14 years now) was suffering from Sandhoff desease which is very similar to Tay – Sachs. If there is anything I can do for all of you please let me know.
You will always be in my thoughts.
In honor of Ronan, we are heading outside (even though it’s 40 degrees out- subhuman temperature for Austin Texas) for a hike on the trails with littlest family member in the front pack . I am thinking of Ronan this walk and sending love.
Dear Emily,
There’s some beautiful music I love to hear when I am with my baby and I would love to share them with you, if you want so. I hope those beautiful sounds will fill your home and warm your hearts. Always of your family, and of Ronan. With love, Eliza
Dear Emily,
I just read your article about Ronan through a link on Facebook and my heart ached for you and Ronan. I’m currently pregnant with my first and I cannot imagine what you guys have had to endure. Please know that I am sending you thoughts of peace, love and joy with the time Ronan will be here. You are a special woman with a special son and it takes an extraordinary individual to face what your family has to face with courage, strength, and you are an inspirational mother to love our children unconditionally and do the best we can for them under all and any circumstances.
To this beautiful family I just wanted to say that you are in my prayers.
I came across your piece in NYT “Notes from a Dragon Mom” and was instantly touched by your strength and peace. I imagine that both come and go with each day, but I pray that more often than not there is peace for all of you. Thank you too, for sharing your story and struggle; reminding us to love and live in the moment. May your Little Seal always be love and joy.
To dragon mom from another dragon mom,
I am a Chinese descendant. My husband is half Malaysian half Filipino. Our eldest child is a healthy 7 years old boy. In May 2009, we were blessed with a beautiful East Asian blend daughter to complete our family. We had joy for the first 6 months after she was born. After that our daughter had global development delay and started to regress. At 18 months old, we were informed what was causing the global development delay — Tay-Sachs Disease. Yes, Tay-Sachs, out of nowhere. The first clue was cherry red spot the ophthalmologist found in her eyes follow by the enzyme test which confirm the diagnosis. It was a complete devastation and great depression for my husband and I.
Today Julia is almost 3 years old. She has lots of different kind of seizures, is G-tube fed, and had had 3 incidents of pneumonia and hospitalized once. The suction machine is always by her side to help get rid of the infinite amount of secretion produce by the body due to aspiration. She is on palliative care, is referred to children hospice services. These are the words Rick Santorum has to learn, palliative care for children and children hospice. The pain, the stress, the depression, the heart break, the hopelessness. One way of describing it is watching my child get executed in slow motion. So there is no surprise that there are times I wish to end the misery by ending our lives prematurely.
The only positive thing about the diagnosis is, it is Tay-Sachs. Even though it is rare, it is well researched. Compare to kids who never have a diagnosis of their illness, at least we can have some form of closure.
Emily, I just finished reading Poster Child and found your blog. Although our experiences are different, we have much in common. I too am a Lutheran woman (went to PLU and also took feminist theology)…affected by birth defects and my damaged body image. (I had a cleft palate and lip, and a club foot.)
My son does not have Tay-Sachs, but he was born at 24 weeks gestation and spent 117 days in the NICU. I loved your dragon parenting article in the New York Times.
I also spent time in Asia–teaching in Japan for 3 years in the late 1980s.
Thank you for sharing your writing and personal experiences with the world. Here’s my review of your book on my book blog:
http://mariesbookgarden.blogspot.com/2012/04/poster-girl.html
Regards,
Marie
Emily, I found your blog as I was looking for something else. I believe I found it for a reason. A good reason. I look forward to reading about your life.
Love, Lori
I was given my son’s diagnosis about 2 years ago on Boxing Day; that he has a terminal rare disease and would not have a long lifespan. Btw, I live in Asia. I have 2 friends who live in US & Canada who have kids with similar rare genetic disease. After spending the past 3 years researching religiously for a clue, a hope, I must say my son is now at a healing journey. Their children are doing remarkably better.
Rare genetic diseases do not fear me anymore and I hope in your darkness moments you do not give up hope and perhaps be one of the first mums out there who prolongs and improves your son’s condition little by little, day by day. If natural health can heal cancer, what more ‘rare disease’ as claimed by allopathic doctors.
Sending Ronan healing energies!
Love
Lin
Hi Emily and family,
I read your Dragon parent article on NY Times a whole back and pinned it on my Kid Stuff board. It affected me in a profound way. I read it when I was pregnant with my son Andrew. He’s nine months now. You taught me such a valuable lesson about parenting, living, loving.
I revisit your article all the time. It inspires me to be forgiving, patient, loving, and kind.
How is Ronan? And your family? I hope to keep following your blog. Good luck, and we are praying for you.
Hi Emily,
I read your NYT article and it spoke volumes to me. I’m also a mother of a terminally ill child. We live a world that most people fortunately will never understand.
I’m passing through Santa Fe (here until oct 6th) if you would be interested in meeting for coffee. I’d very much like to meet you. If it’s possible, my email is nikoladobro@gmail(dot)com.
Thanks for sharing your personal memoir.
I just want to say your child is a gift and everyday he is here makes the world better… He is adorable, i hope you enjoy every minute you have with him.
Dear Emily,
Tonight, my two little daughters, my wife and I will pray for supercute Ronan. May Ronan experience all that you wish for him. Please hug him for us. You are one truly extraordinary and brave mother. God Bless You All.
My heart goes out to you and our family. Thank you for sharing your personal journey. Your story is sure to help others. My husband and I lost our six week old daughter many years ago, yet she still lives within us. Wishing you strength and peace as you live your lives.
Dear Emily,
You are a supermom, fighting a battle no one should ever have to endure. Your kindness, grace, faith, and strength are an inspiration. I nearly lost our 3 week old baby to a near SIDS situation. Near SIDS. SIDS…thats doctor speak for “I dont know”. We were lucky that day and our little girl came though without any serious complications. But those few hours in the hospital, watching the nurses run frantic tests on a baby so tiny she could barely keep her eyes open I went from numb speechless terror to angry bargaining with God. “If You get her though this, I will never ask for anything else”. “If you make her okay, I will never take life for granted again…I will be a better person…I will give up drinking…I will turn vegetarian..I will devote myself to charity…I will never tell a lie again..” Just “Please!” “Please!” “Please!”. Fate was kind to us that day and we all went home, shaken but intact. I felt almost guilty in showing any relief or celebration walking down the pediatric emergency corridors – passing the ashen faces of families and parents who were not as lucky as us.
I read your blog many months after the incident. And I felt ashamed. About how quickly and easily I was ready to shatter. To give up. In hindsight, I felt like an inadequate mom. For what else can be the role of a mom other than to give unconditional, loving, strength.
I read your blog and cried. I read your blog and held my own family a bit tighter. A bit closer. And together we prayed. For you. For Ronan. For your husband. Your families. We cannot do anything to help you. We can only pray for God to give you the strength, and the love to face this test. You are not alone. You and your boy are carried in the love of so many people. Do not give into fear. I cannot begin to imagine what is to come…but through it all, please know a few thousands of people will be reaching out to hold you both when the time comes. Please give your little angel a big kiss from me and tell him that God is keeping a very special place on his lap for him. Someday, you will be reunited.
much, much, much love!
I have a six year old son who I just recently found out back in March, has tay sachs disease also. He just turned six a week ago. every day means so much to me and our family to be with him. I know how hard it is for me to deal with this and I feel horrible for any other family that has to go through what we do, no child should ever have to go through anything like this at all.
Im sorry about your son. we will always be thinking of him in our prays. All you can do is hope.
I happened to see your story about your son on TV this morning. I lost my 2yr 8mo old daughter, Kaitlyn, in March 2012 to Niemann Pick Type A – a rare, genetic, non treatable, incurable lysosomal storage disorder that caused neurological degeneration and slow loss of almost all functions. I very much could relate to you and your story as my daughter was diagnosed at 9 months and her life and struggle were opened up to the world through her blog. I hope the beauty you saw in love from others and the love you shared with your son fills you with comfort as you continue to navigate the grief that comes with the loss of your beautiful son.
I shared this verse at Kaitlyn’s eulogy and it always has brought me great comfort to know that she was made perfect. Maybe not by the way this world would say is perfect, but perfect for the purpose she had here to make a difference and be an light of love. I hope it might bring you some comfort as well.
Psalm 139:13-16
For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
Dear Emily,
I recently heard your interview with Terry Gross. I don’t typically write messages to strangers, but I felt compelled because I also lost a baby a couple of years ago. I connected with what you said about inappropriate reactions and comments you received. I personally loathed being told people felt sorry for me, a friend of mine told me she felt like she had been punched in the stomach (Thanks!), once I received an email saying “that sucks” in response to hearing about my sons death. To this day I still can’t believe some of the reactions. I threw out bouquets of flowers as fast as they came, and I heard more times than I cared to that people would pray for me. I honestly didn’t care if they did or not. That said I made one wonderful friend who was a neighbor I barely knew at the time whom had reached out to tell me about her loss of her son and offered an ear and support. To this day she is a good friend. There was another woman that after asking that question I hated to hear “How’s the baby doing!” with excitement just grabbed me and held me when I had to explain the situation to her. She embraced me for a long time in a true moment of love.
Mostly I wanted to say from a mom who lost a baby as well, I am truly sorry for your loss. It is the most difficult journey, but I know you will find some kind of peace.
Sending love,
Sarah
Thank you for reminding us the true essence of what it is to be human. Your knowledge was hard-won, but your decision to share it is a gift.
Emily,
Thank you for sharing your difficult, beautiful journey with your son. I just listened to your interview on Fresh Air. I look forward to reading your book. Peace to you.
Hello Emily. My name is Jennifer. I listened to part of your interview the other day on Fresh Air. (I listened in the car as I was waiting to pick up my kids from school) Since I heard your interview, I have wanted to share something with you. I too am not one to write strangers, but I feel inspired to contact you. I was hoping to find and email address for you, but I can understand if you would prefer not to. If there is an email address you wouldn’t mind sharing with me, I’d love to communicate that way! I will leave my name and email address below for you. Thanks Emily! ~Jen
Reading the article on CNN about you… loved all your responses and how it changed your outlook on life. When I started to read it my first thought was… I need to see how she handled this, because in my mind, any one of us could face this at any day. (no smug belief here about being blessed). But finding a natural balance between accepting the fact that we may not have them forever, also knowing we won’t be here for them forever, and learning to appreciate them every day rather than take the moments for granted… is pretty profound. Wishing you much love and joy.