FAQ

Because there are so many forms of chILD, your child may have all or some of the following possible symptoms:

photo-box001 (1)

  • Fast breathing
  • Use of “helper” muscles while breathing (The child’s ribs or neck muscles may stand out while breathing in, showing he or she is working harder to get air into the lungs.)
  • Abnormal chest X-rays or CT scans
  • Needs supplemental oxygen
  • Failure to gain weight and/or height (also known as failure to thrive)
  • Persistent crackles, wheezing or other abnormal sounds when listening to the lungs
  • Recurrent pneumonia
  • Recurrent bronchitis
  • Recurrent cough

Children with enough of these symptoms should have further tests to determine if they have chILD and to determine the specific form of chILD. The best way to do this is to work closely with pulmonary doctors. Often, the definitive diagnosis may depend on a lung biopsy to examine the actual lung tissue.

interstitium-for-website copy

When a person breathes, air passes through the airways to the tiny air sacs called alveoli. These alveoli are the sites where oxygen passes into the blood and carbon dioxide exits the blood to be exhaled. In between the surface of the alveoli and the small blood vessels is a very thin connective tissue. This tissue is known as the interstitium. Changes to the interstitium, like swelling or scarring, can reduce the lungs ability to absorb oxygen and/or release carbon dioxide.

When the doctors first began defining chILD, most believed Children’s Interstitial Lung Disease was due to changes in this tissue. As we learned more, we have discovered that several chILD disorders like NEHI have normal interstitial tissue. As a result, we now consider chILD to include forms of Children’s Interstitial and Diffuse Lung Disease.

The conference is the chILD Foundation’s biggest expense this year. We would like to offer travel grants, but these require sponsorships because we do not have the extra funds to cover the grants. We are currently working to find sponsors to offer grants, but so far, have not secured the funds. Keep checking back and we will announce any funds that come available.

We also offer a fundraising program to help cover some of the costs. You can create a fundraising page and send it out to families and friends. We also have a letter of support and a flyer that we can send to you that you can take to local businesses to request help for the conference. Donors can donate via the website or by check and it will be tracked on your fundraising page. All donations given this way are 100% tax deductible for the donor!

We are a 501(c)3 and with that tax exemption, we are limited in the types of support we can offer. We cannot give funds directly to families for personal expenses. However, we can raise money to pay the hotel, food, and costs associated with the conference and we do our best to keep the registration fees for the conference at the lowest level possible.

The chILD Foundation and the chILD Research Network Physicians really enjoy the interactions with the WHOLE family and we truly believe having the kids participate in OxyKids is one of the most enjoyable parts of the conference. We want you and your child’s participation in the conference to be the best experience possible.

Whether or not to bring your kids is a personal decision for each family. We want to encourage participation from the whole family. However, there are some important things to consider.

1. Potential for illness exposure: The OxyKids camp is a really unique opportunity for the kids to meet other kids “just like them” and it is truly an amazing site to see all of the kids interacting. However, if your child has immune issues, you should consider the potential for exposure to illness. We do our best to clean surfaces, have the kids wash hands, and mark personal items like cannulas, cups and pacifiers, but there is potential for a large number of kids to be together. As a result, any children on site with ANY symptoms of illness will be excluded from camp activities and we strongly caution families with really medically fragile children to consider the risk of exposure to normal childhood illnesses.

2. Level of care is limited: We will be hiring child care staff this year and we will have a nurse on site just in case. However, we cannot guarantee that we will have staff trained in complex medical support. We can handle oxygen with tanks, concentrators, or liquid oxygen, but if your child is on a ventilator and/or a continuous feeding, you will be asked to bring a qualified caregiver.

3. If your child has strong food allergies: We will be providing healthy snacks and meals prepared by the hotel, but we have no way of controlling how they prepare the food. As a result, we cannot guarantee an allergy-free environment (especially nuts). If your child has strong food allergies, you will need to assess the risk for your child and provide safe foods to feed at snack and meal times.

4. Your child’s developmental stage: We work hard to provide activities for your child to keep them entertained throughout the conference time. However, if your child has strong separation anxiety or cannot tolerate a lot of activity, you may be asked to come to the daycare area or pick up your child if they cannot be calmed. Many times this results in the child accompanying the parent to a session, which is allowed, but it can be distracting for the parent and for others in attendance.

5. Lastly, many parents report that one of the biggest benefits of attending the conference is the time spent socializing at meals, with the doctors and other families. If your child attends OxyKids Camp, you will be asked to pick up your child at meal times and they will be with you during these social sessions.

That depends on what you are signing up for… For example:

If you want to cover registration for 1 adult with Friday dinner, that cost is $300. With the voucher system, for every dollar donated by your friends, family, or local businesses, $0.75 will go towards your voucher.

If you want to cover 1 adult with dinner, 1 OxyKids for a child over 2 and 1 hotel room for 2 nights your cost would be ($300+$175+$155+$155) for a total of $785. To get all of these costs covered, you would need to raise $1047 dollars.

Some families in the past have held personal fundraisers to cover their costs like local garage sales, selling T-shirts, Go Fund Me and other web-based fundraising sites. We do not want to prohibit you from raising money in the most convenient way.

However, if you are not using this site to raise funds, we cannot endorse the event and you cannot use the name of the chILD Foundation or the logo (Pinwheel) to promote your fundraiser.

This creates a potential problem for the Foundation if the donor believes your request is going to our non-profit and their donation is tax exempt. Donations made to these events cannot be tax deductible under our 501(c)3 status unless the funds are donated directly to the Foundation and deposited into our accounts. Also, if you choose to raise money with funds given directly to you, the IRS sees this money as income and you may be required to pay personal income tax on these contributions.

We don’t understand all the causes of the different chILD disorders. Some children are affected at birth while others are not affected until later in childhood. There are some children that appear to be healthy until they catch some kind of other illness (i.e. colds, RSV and/or bronchitis) which starts the process of chILD. For these children, early treatment and intervention is really important to slow or halt the process of the disease. Certain forms of chILD (such as surfactant problems) are inherited through genes. We can test for a few genetic causes of chILD, but most do not have a genetic test yet. Without more research, it will be difficult to determine the role genetics may play in other forms of chILD.

  • Children’s Interstitial and Diffuse Lung Disease (chILD) is not a single disease. Instead, chILD is a heterogeneous group of rare lung diseases that affect infants and children.
  • Some of these diagnoses are unique to children, but many are seen throughout the lifespan and can be expressed in both children and adults. Adults can also suffer from ILD. Some diagnoses are only seen in adults, and most physicians consider adult ILD a totally different disease than chILD. The most common and severe form of adult ILD is usually interstitial pneumonia/idiopathic pulmonary fibrosis, which has not been found in infants and young children. The term “idiopathic pulmonary fibrosis” means scarring of the lungs for unknown reasons and can occur in children and adults, however, the adult version may not be the same disease process in infants and young children. Recently more families are being discovered that have multiple generations with pulmonary fibrosis that begins in different age categories. This suggests there is a common cause in these families and some causes cross over between adult and pediatric ILD.
  • These ‘cross-over’ diagnostic categories are critical for understanding the development, progression, and under-lying causes of fibrosis and other pulmonary conditions.child-Adult-IPF-300x207

Figure 1: The relationship between chILD disorders and adult lung disease diagnoses. Some diagnoses are unique to each population. However, some occur in both adults and children and others are considered disease modifiers and have been implicated in altering the course of the progression of adult lung disease and should be an area of focus for combined research.

(NEHI=Neuroendocrine Hyperplasia of Infancy, PIG=Pulmonary Interstitial Glycogenosis, SFTPB=Surfactant Protein B, BOOP=Bronchiolitis Obliterans with Organizing Pneumonia, COP=Cryptogenic Organizing Pneumonia, OB=Obliterative Bronchiolitis, LIP=Lymphocytic Interstitial Pneumonia, SFTPC=Surfactant Protein C, ABCA3=ATP binding cassette protein, NSIP=Non-Specific Interstitial Pneumonia, NKX2-1=NK homeobox 1 is involved with Thyroid Transcription Factor 1, TERT=alters telomerase transcriptase (TERT) expression, DIPNECH=Diffuse idiopathic pulmonary neuroendocrine cell hyperplasia, SFTPA=Surfactant Protein A, MUC5B=variation in the MUC5B airway mucin gene, IPF=Idiopathic Pulmonary Fibrosis, UIP=Usual Interstitial Pneumonia, AIP= Acute Interstitial Pneumonitis)

Because children are not small adults and the forms of ILD are different, children who have or may have chILD should see a pediatric pulmonologist, ideally with experience in chILD. Families that have multiple generations affected should also reach out to the chILD Research Network.

While chILD disorders are rare and under-funded, the investment in chILD research has wide-ranging implications for understanding adult lung disease.

We work really hard to keep registration fees as low as possible. However, our estimated cost per adult (based on last year’s attendance) is $643.00. This covers the event space, audio visual support, physician honoraria, and food for attendees. The cost of food in the Boston area is higher than previous years so we set the prices to cover our food costs only. This caused the increase in price.

We recognize that registration and travel costs can be a burden for families already experiencing the costs of the care of a chILD patient. We offer a fundraising program for families to solicit support for the conference. If you are interested in this program, please visit its page here.

If you have paid any registrations fees and you cancel no later than July 15, 2015, we will issue you a full refund. It will take 1-2 weeks for you to receive the refund in the mail.

You will need to cancel any reservations with the hotel. We do not control billing there and you are responsible for cancelling that reservation.

If you have fundraised and you cannot make the conference, we cannot refund the money to you. However, if a donor requests a refund, we will refund their donation. Any donations made in support of a family that does not come to the conference will roll over to cover other costs of the conference.

The Continuing Medical Education Program (CME) is available for physicians to gain training hours to keep their medical licenses current. As a result, there are many regulations surrounding how a CME can be conducted. Having parents coming and going throughout the sessions would cause a distraction. As a result, we cannot allow parents to come and go into the actual sessions.

However, we understand that there will be a lot of information given that is of interest to the families. So we will have a special CME viewing room that will have an audio and video live feed from the CME room. Parents can come and go in this room to get the information and will have an opportunity to ask the doctors specific information about the CME presentations on Sunday.

This is included in your registration and has no additional charge to you.