Emma, age 4

“This is Emma.  She’s 4 years old and is living with primary lymphedema of her lower extremities from her toes to her belly.  At 7 months old we knew there was a problem when she woke up one morning with a swollen foot.  She was finally diagnosed at 1 and 1/2 years old.  As a care giver of a child with lymphedema I see first hand the daily struggles that occur.  In her 4 short years on this Earth, Emma has so far been hospitalized twice for infections.  The first time was an aggressive lymphangitis infection that started in her foot that resulted in a 3 day hospital stay, and this past September another aggressive infection complicated by a strep B blood infection for which we stayed in the hospital for 6 days and had an at home IV PICC line for 10 days following her release.  Some days I cry, sob really.  It is so frustrating to have a child with a disease that most doctors know nothing about, but through all of this, somehow Emma’s energetic spirit for life and laughter remains untouched.  She can teach us all so much about the real strength of the human spirit.

I have never met a happier, sillier little being.  Emma LOVES to dance!  She’s constantly dressing up and singing and dancing around our house and attends dance class every Tuesday.  At the end of the year her dance school puts on a terrific recital at a fancy theater near our home which Emma refers to as ‘Hollywood’!  She loves playing with her big brother, Jacob and her cousins too.  She’s attending pre-K this year and gets to ride the ‘big bus’.   No matter how she is feeling on a given day she begs to go to school.  I can only hope that state of mind continues through her high school years!  Her resilience is admirable and keeps all of us around her strong.  She loves animals, especially her cat Finnigan.  Her precious face is one of the many faces of lymphedema.  In Emma’s words ‘I’m going to be ok mommy’ and the rest of you who suffer from lymphedema will be too!”

November 2012

21 comments on “Emma, age 4

  1. What a fantastic story. She is a beautiful little princess with an amazing smile!

  2. lucewriter

    Hi, it’s Luanne from dontwelookalike. I’m going to follow you from my other blog. This is great story! What a little cutie.

  3. What a wonderful little girl, who has a loving and caring family. So glad to know you and cover you in my prayers. Love, Kim

  4. Cheryl Sherwin

    Emma is my grandchild, she is such an energenic child. Her smile can melt your heart . She keeps you in stitches with the comments she comes out with ; Mom was giving Emma a pep talk about being greedy and said “life is not about things”—Emma pipes in ,”nope it’s about love and make-up! Mom was trying to stress the sq blend to Emma [squirrel ] .Emma says ,
    “mom it’s quirrel I’m saying it in French you know !” She is always coming out with stuff like that ! Mom does a super job with her she is treated the same as her brother. Emma knows the things she needs , tights , lotion, needs to stay dry , her bear feet can’t touch the floor and she can explain to people why she has to wear heavy tights in 90 degree weather .Emma is one brave and special little girl . I hope she keeps that attitude throughout her life .

  5. Thank you so much for sharing! My 18 mo daughter has primary lypmhedema. It is so great to see your daughter dancing and doing the regular little girl things that we can’t always take for granted :)

  6. Emma,

    You are the cutest little thing I have ever seen and you and your brother melt my heart just like a crayon sitting in the sun, and I love seeing you and jacob in school

    Love you Emma, and Jacob

    Love,
    Alex

    (P.S)- Tiffany and the rest of you guys stay strong and call us if you ever need anything

  7. chrissi ruf

    Emma is the sweetest child we have the honour to have known, through her god mum Megan, our daughter. To see the care that Tiffany, her mum, gives is heart rendering. We would love to promote her journey to Germany, where, it seems, that lymphodema in children, is being studied. We love her, and think of her often, Chrissi and Dieter Ruf

  8. Elles sont a mourir de rire…qu’elles sont adorables! (The best way to translate that is to say you could die laughing just looking at those girls…they’re adorable!) Hairbows as big as their heads, and those costumes and poses! Trouble is, I can’t tell which one is Emma. Four-year-olds tend to look like cute chunky monkeys everywhere!

  9. What a super brave and fantastic little princess Emma is…my baby girl is just 13 months with primary lymphoedema from birth thankfully we have no infections yet except for permanent toe nail infections which has slowed down her development. Emma gives me great hope for Mary-Kate’s future which is something that has been hard to get. If Mary-Kate does as well as Emma at 4 I will be 1 happy mummy!!! Loads of love to you all x

  10. George Shepherd

    What a fantastic little girl! My partner (52) has Milroy’s Disease but didn’t develop Lymphoedema until a couple of years ago. It’s in her legs. She has been hospitalised on several occasions with infections, once with sepsis.
    Your little girl is an inspiration!

  11. Donna Miskella

    Hi you have a beautiful little girl. I’m sorry to hear she has been through so much. We also have a 4 yr old girl with lymphoedema in her right hand and arm. She wears compression garments and frequently has MLD. We have been blessed so far that she hasn’t had an infection. Like your daughter she is very active, happy and takes things in her stride. I think they teach us a thing or two on staying positive and dealing with events as they occur. It is such a pity that more doctors are not aware of the condition. Wishing you every happiness for the future.

  12. Vatsala Vijiendram

    Emma, you are such a brave and lovely girl. I too have lymphoedema on both my lower limbs. I know how it is to be hospitilised for cellulitis and the helpless feeling when doctors say they have no solution. I have however a suggestion that I would like to share with everyone here who also have the same condition, I now manage my swelling and avoid being exposed to infection by taking the Forever Aloe Gel supplement. I am sure you can google and find out how to get it at your nearby distributors. It has reduced the swelling on my legs, the discoloration of my skin, no more scaly dry skin, and best of all I am now pain free since I started drinking the Alor Gel. It has been two years now and I feel great. Trust it will help you and many others who suffer from lymphoedema.

  13. Marsha Rofel

    what an inspiration you are, Emma.

  14. Heather todd

    I have tears in my eyes reading your story of Emma, my wee girl Isla was born with Primary Lymphoedema in both her lower legs and feet. To see Emma at a dance class is fab as I just assumed Isla wouldn’t be able to attend as its impossible to get regular shoes for her never mind trying to source dance shoes.
    Isla also loves to dance,spin, jump and generally go toddler crazy.

    She truly is an inspiration.

    Heather

  15. Emma Worthylake-Petter

    Emma u are truly inspirational. My 13 month old daughter was diagnosed with primary
    Lymphoedema at the age of 5 months old and also has it from her toes to her tummy and from her fingers to her shoulders. We have just received Gracie-louise’s special boots to help her walk and we r waiting for January to get her measured for her bandages. Thank you for your story Emma I can see that Gracie-Louise is not alone and that u r doing everything a beautiful little lady should b doing. Sending love to you and your family
    Love
    Gracie-Louise and her mummy Emma xxxxxx

  16. Continue dancing and rising smiles beautiful Emma!, Let it inspire you all cross your life and to face adversity as you do now!

  17. Amy_God's Chosen

    Wow! What a beautiful little girl! It is amazing how much a little inspires me! Living with Lymphedema is hard but hearing her story just makes me want to keep striving no matter what! I know you much be so proud of her! Gorgeous! :)

  18. Sweet little princess. I fully understand, and my son who is 17 months old suffering from primary lymphedema of the lower extremities.

  19. Pingback: Research Roundup: Axillary Nodes, Advocacy, and the Lymphedema Lobby Days – The Lymphie Life

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